The Many Faces of Hepatitis C

The Liver Clock by.... Nicole Cutler, L.Ac.

2010-07-18T11:15:00.000-07:00

Hepatitis C

July 6, 2010

While most of us check the time throughout the day to stay on schedule, few realize that the liver also has a timed agenda. By heeding your liver's innate clock, those with Hepatitis C can help relieve some of the extra burden on this multitasking organ.

by Nicole Cutler, L.Ac.

Chronic Hepatitis C is a worldwide problem, infecting the livers of an estimated four million people in the U.S. alone. Until a guaranteed cure is devised for Hepatitis C, those with the virus must make every effort to support their liver's health by relieving it of unnecessary tasks. While there are a variety of strategies employed to support liver health, one that is often overlooked is working with the liver's schedule.

In charge of a long list of life-sustaining functions, the liver is an extremely busy organ. A few of its crucial duties, include:

• Producing bile, which helps carry away waste and breaks down fats in the small intestine during digestion.
• Producing certain proteins for blood plasma.
• Making cholesterol and special proteins to help carry fats through the body.
• Converting excess glucose into glycogen for storage.
• Converting poisonous ammonia to urea (urea is an end product of protein metabolism and is excreted in the urine).
• Clearing the blood of drugs and other poisonous substances.
• Resisting infections by producing immune factors and removing bacteria from the bloodstream.
Not surprisingly, the liver can't accomplish all of its amazing feats simultaneously. All of the body's organs, including the liver, have periodic cycles where different functions are emphasized at different times. The liver is no different, with a cycle completing every 24 hours.

The Liver Cycle

Although scientists are just beginning to recognize the phases of the liver's cycle, the following appear to describe the hepatic clock:

• The liver synthesizes complex chemicals and processes toxins the most when the production of bile is lowest.
• Along the same lines, chemical synthesis and toxin processing is lowest while the liver's production of bile is highest.
• Because bile is needed for food processing, the liver makes a greater proportion during the day - and less at night.
• Bile production is assumed to be at its highest at 9am and lowest at 9pm.
• After 9pm, the liver switches to its other primary functions, synthesizing chemicals and processing accumulated toxins.
• The cycle begins shifting around 3am, when the liver slows chemical synthesis and readies itself for bile production.
• The liver cycle shifts again around 3pm, when chemical synthesis begins to increase and bile production decreases.

Thus, the liver is most prepared to aid digestion with its synthesis of bile between 9am and 9pm. This is important information for those with chronic Hepatitis C who want to work with - and not against their liver.

Practical Application of the Liver Clock

Although our busy lifestyles often dictate when we eat and when we sleep, those with Hepatitis C could benefit from scheduling necessities around their liver's needs. Since bile production is down late at night, eating a big meal past 9pm puts an additional strain on the liver. Thus, experts advise eating the last meal of the day long before the nine o'clock hour.

In addition, the liver's schedule of producing chemicals and detoxification (crucial for liver health) is best accomplished without additional demands. For this reason, most experts suggest retiring for the night close to 9pm whenever possible. Although this seems extremely early for many adults, those who try it report achieving a deeper and more restful sleep.

The liver's clock may not mesh with a modern, busy schedule. However, eating early and going to bed early cooperates with your liver's natural rhythm. By taking small steps to conform to your liver's cycle, those with Hepatitis C can remove the extra challenge that multitasking can place on their liver.
References:

Buhner, Stephen Harrod, Herbs for Hepatitis C and the Liver, Storey Publishing, North Adams, MA, 2000: p 18-19.

http://focus.hms.harvard.edu/2008/092608/research_briefs.shtml, Peripheral Circadian Clocks Take Center Stage in Homeostasis, Alyssa Kneller, Retrieved September 21, 2009, Focus, Harvard Medical, Dental and Public Health Schools, September 2008.

http://www.healthsystem.virginia.edu/uvahealth/adult_liver/liver.cfm, The Liver: Anatomy and Functions, Retrieved September 21, 2009, The University of Virginia, 2009.

http://www.hepatitis.org.uk/s-crina/liver-f3-main3.htm, Key Liver Functions, Retrieved September 18, 2009, hepatitis.org.uk, 2009.

Janet’s Story.....................

2010-07-03T06:50:00.000-07:00

It was suppose to be a routine annual physical, I got blood taken and I really didn’t think much about it. When his office called and said he wanted to see me, I thought it odd but when we met he said my cholesterol seemed to spike which was unusual for me and we took blood again. So when they called me two days later and asked to see me again, I was suspicious. I never felt tired or run down or had any symptoms I associated with Hep C. I thought only people who used needles got it, so I was angry and dismissive when he told me to see a gastroenterologist and get properly tested, I was convince he was just wrong.

I had a friend who was a doctor at NYU I called her and she recommended Dr Tobias, after checking him out and see how well respected in the field he was, I made an appt to go see him, I was pretty freaked out by this time. I had gone online wanting to be more informed about what this Hepatitis C virus was about and had read so many scary stories on line and statistic I literally thought I was going to die.
I must say going to see a specialist like Dr. Tobias was the best thing I could have done. He assured me I wasn’t going to die anytime soon and say about 80% of his patients find out they are infected like I did. He mapped out what needed to be done – more blood test, and a liver biopsy, which we did about 2 months after my first visit. It was confirmed I had it and was currently at Level 1, the doctor told me about my options which consisted of starting treatment (Peginterferon and Ribovirin) which after learning about it and speaking to a dozen people who had been thru this treatment I decided to hold off, it seemed very toxic to me and the side effects too great. Again I’m feeling fine and hadn’t had any symptoms so the idea of under going thru such a treatment for a year wasn’t appealing. Dr Tobias was patient with me, he knew I wasn’t in any danger and I saw him very few months and he monitored my blood.

I decided to do what I could to help myself, I stopped drinking (not that I was a big drinker but even socially) I started eating better and upped my work out schedule

and tried to not get too stressed out (stress effects the liver). I looked into homeopathic solutions and started a regiment of taking Sho-Saiko-To three times a day an herb that showed some promise, not as a cure but to help the liver function properly. Did that for over 3 years and while my liver didn’t get any worse and my ALT level stayed normal I decide after my second biopsy last summer to go off and see if there was any change, there wasn’t so I’ve been free of any supplements for almost a year now.
My recent biopsy last summer showed that the virus has spread and now I’m a level 2.

I’ve started discussions with my doctor about treatment and there are a lot of new drugs that show a lot of promised that will be available in the fall of 2011. These new treatment show a greater chance of me clearing the virus (80%) as opposed to 50 – 60% of the current treatment.
I’m not under any illusions that it will be a walk in the park but I’m prepared and I have a great support group of friends and family, co workers around me. I would love to have this behind me and have met so many wonderful people who have recovered by Hep C and have gone on to lead healthy lives.

If I can suggest to anyone first leaving of their having Hep C – you yourself a service and get to a good doctor, ask around there are support groups and online forums. Staying in your head worrying about the “what ifs” is scary, get the facts and seek help. There’s lot of new drugs on the horizon that can help.

The companionship of a dog..............................

2010-07-03T06:46:00.000-07:00

About four years ago, in one of the newer subway cars, lit up so much you feel like you are in a fish bowl, I sat across from a poster with a man’s face, part of it looked, looked, well, like a burnt marshmallow. It said something like: If your face looked like your liver you would get treatment.

No how, where or when. Gee thanks. I would, if I could, if I should.

Allot stuff in a short time led me from a relatively happy, healthy, self-sufficient & productive life to that point of life-less-ness, 31/2 yrs of stuff, not nice stuff.……I put my dog of 12ys to sleep, saw the second plane hit the world trade center & worked next to the city’s ME office, where, for years, the remains of 9/11 victims were dealt with.……I began to drink vodka, , insane amounts of vodka.…….one, then the other person I worked for moved on , job got too hard, job got sabotaged, job got too easy, got no job.......pre- then full on menopause, which became disruptive then destructive. .…… short term, followed by working memory, began to fail…….poor long term memory since childhood…… I was thirsty all the time & my brain was being fried; sunlight hurt, florescent lights hurt……. …....my closest & dearest friend had been using me but I had no clue & out of the blue he publicly dumped me…..already a loner I isolated my self, had no social support, no friends……It is so very easy to louse yourself in a city so big…....I let myself get into the craziness of methamphetamine abuse. I experienced case of bursitis so bad I had to take cross-town buses for several months. Stuff like that.

November of 2004 I was diagnosed with HepC, w/ a high titer & some liver damage. I stopped drinking, cold, immediately started sleeping too much & crying. Ridiculous, public displays of emotion.
Most likely I got the virus in my mid 20’s, but I hoped that I got it later in my 30’s when I worked on AIDS research projects with infected blood. I figured I had time, that odds were against successful treatment & better drugs were on the way. Alone I started to “fix” my apartment, look into other jobs, career changes & school. I tried to be self-employed. Initially found good dental care at schools but later had my gums mangled by a practicing hygienist. I was successfully evaluated for a clinical trial with a protease inhibitor, but for some mysterious reason was not included. I looked into other ways to get medical care but was only able to find mental heath care [later]. I had bounced back & forth between a zombie-like state & the high energy the neurotoxin caused from mid 2003 to mid 2007. Finally I just stopped. My life, my apartment & myself were in embarrassing disrepair & remain so to this day. I was deep into depression, had no sense of time, no credibility & had accomplished nothing.

Less than a 1½ ago I got a dog quit smoking & cut way down on caffeine. I already ate right & walked allot. I got some mental health care & LATER found a support group. Age, drugs & alcohol use or lack there of, loss of estrogen, chronic infection, the ever popular stress & so on. Any, all, or a combination have taken their toll. It’s hard to know. I still remain unemployable on so many levels. I can’t afford insurance & I am afraid to gamble with what little savings I have on anything other than current living expenses.

I may have come a long way, I’m clean, sober & able to read & daydream again but in my mind I am still sitting on that train, soooo tired with my side hurting looking at the man with the burnt marshmallow face wondering if I should & how I’m supposed to get treatment & pay my rent at the same time. The only thing I know for sure is that I need to have a dog.

HEP C ~ FINDING THE SILVER LINING

2010-07-03T06:36:00.000-07:00

Recently, it occurred to me having Hep C is the best thing that ever happened to me. Odd as this sounds, this is why:

The majority of my life has been spent thinking about the sexual abuse which I was a victim of starting at age 11. Until I was in my early 30's I had never told anyone what had taken place. The abuse was not a single event and went on for most of my teenage years. During this time, I had been victimized by at least six different pedophiles, did not live at home choosing the streets in Vancouver instead. One of the evil things about sexual abuse is the victim, being me, tends to blame themselves for what took place. As a result, from the time the abuse took place until I was in my 50's, I did my best to bury myself in drug and alcohol abuse.

I never told anyone about the sexual abuse until I was in my mid 30's after attempting suicide. After the attempt and during my stay in the hospital I was lucky in speaking with a nurse who encouraged me to attend community counselling which I did. I would like to say counselling "fixed me" - this was not to be the case though. Yes, the counselling did help to an extent, but my abuse of various substances, soft and hard drugs, continued to the day I discovered I was Hep C positive in 2007. Having Hep C was a milestone in my life and I finally turned the corner and stopped drinking and doing drugs.

I had to face the fact I had been living two separate lives for many decades. One, was my working life - somehow even with the substance abuse I had managed to build a successful career. The second life I lived was spent thinking about and trying to forget what had happened to me. I had next to no friends over this time - I was married once and then divorced two years later. Socially, I was very inept. I simply felt like I did not fit in anywhere and avoided social interaction as much as possible. I realize now I had allowed myself to become a victim. Because of this, my inner voice was entirely focused on past events and I spent next to no time thinking about my future. I simply drifted along pretty much following the path of least resistance. When I had no alternative and had to attend a social event, I often got drunk or stoned enough to make a fool of myself. This of course amplified my self-isolation even more.

So why, at age 52, was discovering I was Hep C positive a good thing? First, it ended my cycle of substance abuse. Second, I learned for the first time in my life who I really was and that I did have value as a person. During my first, Interferon / Ribavirin treatment to try and kill the virus, I discovered a local Hep C support group. Sitting in a room with others dealing with Hep C was one of the most energizing experiences of my life. I found I wanted to help others and in turn wanted to help myself as well.

I volunteered with a non-profit Hep C society focused on the education, prevention and peer support. Since I was not working, I was able available as a volunteer much of the time. My inner voice changed, I began thinking about ways to help and further support others. My focus shifted to the future and how best to spend my time as a volunteer. I found this so energizing and really the final step in turning my life around. I've met some great people - who I want to spend time with. I no longer feel like I am being judged negatively by myself or others. In short, being positive for Hep C has helped me to want and develop a positive inner voice.

Brian

Stevie Hunter's Hepatitis C Story

2010-06-13T12:46:00.000-07:00

About four years ago, in one of the newer subway cars, lit up so much you feel like you are in a fish bowl, I sat across from a poster with a man’s face, part of it looked, looked, well, like a burnt marshmallow. It said something like: If your face looked like your liver you would get treatment.

No how, where or when. Gee thanks. I would, if I could, if I should.

A lot of stuff in a short time led me from a relatively happy, healthy, self-sufficient & productive life to that point of life-less-ness, 31/2 yrs of stuff, not nice stuff.……I put my dog of 12ys to sleep, saw the second plane hit the world trade center & worked next to the city’s ME office, where, for years, the remains of 9/11 victims were dealt with.……I began to drink vodka, insane amounts of vodka.…….one, then the other person I worked for moved on, job got too hard, job got sabotaged, job got too easy, got no job.......pre- then full on menopause, which became disruptive then destructive. .…… short term, followed by working memory, began to fail…….poor long term memory since childhood…… I was thirsty all the time & my brain was being fried; sunlight hurt, florescent lights hurt……. …....my closest & dearest friend had been using me but I had no clue & out of the blue he publicly dumped me…..already a loner I isolated myself, had no social support, no friends……It is so very easy to louse yourself in a city so big…....I let myself get into the craziness of methamphetamine abuse. I experienced case of bursitis so bad I had to take cross-town busses for several months. Stuff like that.

November of 2004 I was diagnosed with HepC, w/ a high titer & some liver damage. I stopped drinking, cold, immediately started sleeping too much &

Crying. Ridiculous, public displays of emotion.

Most likely I got the virus in my mid 20’s, but I hoped that I got it later in my 30’s when I worked on AIDS research projects with infected blood.

I figured I had time, that odds were against successful treatment & better drugs were on the way. Alone I started to “fix” my apartment, look into other jobs, career changes & school. I tried to be self-employed. Initially found good dental care at schools but later had my gums mangled by a practicing hygienist. I was successfully evaluated for a clinical trial with a protease inhibitor, but for some mysterious reason was not included. I looked into other ways to get medical care but was only able to find mental heath care [later]. I had bounced back & forth between a zombie-like state & the high energy the neurotoxin caused from mid 2003 to mid 2007. Finally I just stopped. My life, my apartment & I were in embarrassing disrepair & remain so to this day. I was deep into depression, had no sense of time, no credibility & had accomplished nothing.

Less than a 1½ ago I got a dog quit smoking & cut way down on caffeine. I already ate right & walked allot. I got some mental health care & LATER found a support group. Age, drugs & alcohol use or lack there of, loss of estrogen, chronic infection, the ever popular stress & so on. Any, all, or a combination have taken their toll. It’s hard to know. I still remain unemployable on so many levels. I can’t afford insurance & I am afraid to gamble with what little savings I have on anything other than current living expenses.

I may have come a long way, I’m clean, sober & able to read & daydream again but in my mind I am still sitting on that train, soooo tired with my side hurting looking at the man with the burnt marshmallow face wondering if I should & how I’m supposed to get treatment & pay my rent at the same time. The only thing I know for sure is that I need to have a dog.

HEP C ~ FINDING THE SILVER LINING

2010-05-10T13:23:00.000-07:00

Recently, it occurred to me having Hep C is the best thing that ever happened to me. Odd as this sounds, this is why:

The majority of my life has been spent thinking about the sexual abuse which I was a victim of starting at age 11. Until I was in my early 30's I had never told anyone what had taken place. The abuse was not a single event and went on for most of my teenage years. During this time, I had been victimized by at least six different pedophiles, did not live at home; choosing the streets in Vancouver instead. One of the evil things about sexual abuse is the victim, being me, tends to blame themselves for what took place. As a result, from the time the abuse took place until I was in my 50's, I did my best to bury myself in drug and alcohol abuse.
I never told anyone about the sexual abuse until I was in my mid 30's after attempting suicide. After the attempt and during my stay in the hospital I was lucky in speaking with a nurse who encouraged me to attend community counselling which I did. I would like to say counselling "fixed me" - this was not to be the case though. Yes, the counselling did help to an extent, but my abuse of various substances, soft and hard drugs, continued to the day I discovered I was Hep C positive in 2007. Having Hep C was a milestone in my life and I finally turned the corner and stopped drinking and doing drugs.

I had to face the fact I had been living two separate lives for many decades. One, was my working life - somehow even with the substance abuse I had managed to build a successful career. The second life I lived was spent thinking about and trying to forget what had happened to me. I had next to no friends over this time - I was married once and then divorced two years later. Socially, I was very inept. I simply felt like I did not fit in anywhere and avoided social interaction as much as possible. I realize now I had allowed myself to become a victim. Because of this, my inner voice was entirely focused on past events and I spent next to no time thinking about my future. I simply drifted along pretty much following the path of least resistance. When I had no alternative and had to attend a social event, I often got drunk or stoned enough to make a fool of myself. This of course amplified my self-isolation even more.

So why, at age 52, was discovering I was Hep C positive a good thing? First, it ended my cycle of substance abuse. Second, I learned for the first time in my life who I really was and that I did have value as a person. During my first, Interferon / Ribavirin treatment to try and kill the virus, I discovered a local Hep C support group. Sitting in a room with others dealing with Hep C was one of the most energizing experiences of my life. I found I wanted to help others and in turn wanted to help myself as well.

I volunteered with a non-profit Hep C society focused on the education, prevention and peer support. Since I was not working, I was able available as a volunteer much of the time. My inner voice changed, I began thinking about ways to help and further support others. My focus shifted to the future and how best to spend my time as a volunteer. I found this so energizing and really the final step in turning my life around. I've met some great people - who I want to spend time with. I no longer feel like I am being judged negatively by myself or others. In short, being positive for Hep C has helped me to want and develop a positive inner voice.

Brian

Margi's Inspiration............

2010-05-10T04:32:00.001-07:00

100% of the Proceeds .......

2010-05-09T15:47:00.000-07:00

Tawn Mastrey Cookbook Sales to Benefit Hepatitis C Research

By Newsferatu, Writer

Saturday, May 1, 2010 @ 11:42 PM

Eat This!, the cookbook written by for KNAC FM Air personality, the late Tawn Mastrey, has been announced for preorders and will be printed in May.

The Tawn Mastrey Foundation (TMF) has announced that 100% of the proceeds from sales of the book will benefit the TMF HCV/Health, Awareness, Education, through Music, Art, Entertainment, Media, Internationally, for more events, other non profit foundations for HCV, and also research to hopefully help eradicate this Silent Killer (Hepatitis C/HCV).

To purchase your copy of Eat This!, please visit www.archbooks.com

You need to be your own advocate ......Jean Poe

2010-05-09T13:48:00.000-07:00

I started my hep c journey one year ago next week. I wasn't feeling well one afternoon and lay down for a nap. I woke up and ran for the bathroom vomiting blood all the way. Nearly passed out then. We live only 6 blocks from a small local hospital but I was so weak I couldn't get up so my husband called for an ambulance. The EMTs immediately scheduled a life flight to Spokane which has large medical centers. I spent 3 days there but only remember the last one when I was discharged. I was diagnosed with bleeding ulcers and they also found hep c. I had been a drinker ever since my 20s and I am 60 now. I had no insurance so when I got home and got to feeling better--and that was several months later--I started the process to get on Medicaid. Bills were piling up--$15,000 for life flight, $45,000 for the big hospital and another $13,000 for the smaller hospital just to list a few.

Medicaid required me to go to a specialist for the hep c and the best I found was a 100 mile round trip from my home. He is an excellent Doc and has been through treatment 3 times for hep c. He really knows what the treatment is about. My biopsy results showed cirrhosis and grade 3 inflammation which isn't too good but I was ready to start and go for it. Not so fast--the biopsy also showed a hereditary disorder called Hemochromatosis. This causes the liver to hold on to too much iron and mine was sky high. The Doc wanted to maximize my chances for success on treatment so decided to get the iron down first because it interferes with the treatment meds. That involved weekly phlebotomies for almost 4 months. The procedure is like donating blood, only they dispose of it instead of using it. So finally my iron came down and I was able to start treatment on Peg-interferon/Ribavirin. It has been 4 weeks now and I am one of the lucky ones that have hardly any side effects. I will have to do this for 48 weeks but I am willing to do whatever it takes to get rid of the virus and give my liver a break--this will give me many more years I hope! I have never been able to pin down how or when I got the virus but that part really isn't important. The important part is getting the word out about this virus and how serious it is. Most people don't even know they have it and routine blood tests for it are not done. You need to be your own advocate and demand a test. There are so many ways to get it--of course the stereotype is IV drug use--but any medical or dental procedure done before 1992 is suspect because they did not test blood then as they do now. Body piercings and tattoos are another big one, along with our vets that received vaccinations with the injection 'guns'.

Having hep c has changed my life. Now I want to help other people get through the treatment as much as I am able. I also take any opportunity to talk about it with people and some just don't want to know. Most will 'indulge' me.
That's my story so far and it isn't over yet--my first check to see if I am responding to treatment is coming up so that is a big day for me.

Thanks for letting me tell this story--it's one of many, many, many!!

Jean Poe

Living With Chronic Hepatitis

2010-05-08T14:50:00.000-07:00

So little funding...... Beth Ann Robinson, Indiana

2010-05-07T08:36:00.000-07:00

Beth Ann Robinson, Indiana

I am a 57-year-old female with Cirrhosis caused by Hepatitis C caused by blood transfusions in 1975, 1976, or 1984. (Genotype 1b, viral load--1 million, Stage 4A liver disease) After spending many months with digestive upsets, my family doctor referred me to an internist for help with elevated liver enzymes. After trying many things, it was decided that I must have gallstones; and I was referred to a surgeon. At the same time my gallbladder was removed, a liver biopsy was done. This was in 1989, and the diagnosis of Hepatitis C was made.

I spent several months trying to find a liver specialist who had treated more than a handful of patients with this ailment. Finally, I saw a hepatologist at the Indiana University Medical Center who in 1990 had treated approximately 150 patients with interferon. At that time, the only treatment offered was six months of interferon monotherapy. I have taken several courses of treatment, but that one was the worst! I lost 20 pounds in 6 months. Although I responded tothe treatment, I relapsed immediately.

During the next few years, I searched and searched for information. I joined the American Liver Foundation and later the Hepatitis Foundation International to which I still belong. Information was difficult to find and slow in forthcoming. About fourteen (14) years ago, I became one of the original members of a hepatitis support group in Indianapolis. As we became more organized and shared our resources, we learned more about the disease and the latest in battling it. The following is a list of some of the best books I have read regarding HCV in the past 20 years: Sweet Reprieve by Frank Maier (true story of transplant due to Hep C), Living with Hepatitis C - A Survivor’s Guide by Gregory Everson, The Hepatitis C Handbook by Matthew Dolan, and The Kokopelli Theory by Kevin Correa (fiction--but very interesting!). Also, I ave subscribed to Hepatitis/Liver Health magazine which has very up-to-date information on everything from diet to treatment to transplants.

Lifestyle changes for me were minimal. I changed my diet by eating more fruits and veggies, more baked meats, and eliminating foods high in fat content. That included fried foods, dairy products high in fat, and chocolate. As I was already a teetotaler and had never even smoked marijuana, abstaining from alcohol and drug use was not a problem for me. However, learning to pace myself and rest more were challenges. At the time of diagnosis, I was working a full-time job as well as a part-time job, and my children were ages 13 and 10.

Liver biopsies were repeated in 1996 (stage 3) and in 2000 (stage 4). The last biopsy was rather scary as my blood pressure went extremely low afterward requiring two injections of atropine to regulate it. Instead of the usual 4-hour outpatient stint for a biopsy, I was at the hospital for 10 hours.
I began the Peg-Intron/Ribavirin combination therapy in mid-2001, but I was quickly withdrawn from treatment due to critically low white blood cell and platelet counts. A bone marrow biopsy determined that Hepatitis C had damaged my bone marrow. Therefore, when I take treatment, I must use growth factors (also called rescue drugs) such as Procrit and Neupogen.

During 2002, I completed one year of Peg-Intron/Ribavirin combo therapy. Even though the virus was non-detectable at 12 weeks and at the end of treatment, it reared its ugly head six months later! Important tips that I learned during this course of treatment included drinking 2 liters of water per day and exercising. It was difficult to drink that much water at first, but now I find myself thirsty for it all of the time. If I can't get outside for a walk, I have a treadmill that I use for walking at a slow pace for 10 minutes per day. Exercising seems to greatly alleviate the irritability caused by the interferon.

Problems I have encountered due to the disease and interferon treatment include: encephalopathy (I take lactulose for the brain fog), hypothyroidism (caused by interferon - take Synthroid), leg and arm cramps (take vitamin E, and Darvocette), severe osteoporosis (take Fosamax), migraines (take Imitrex), continued low blood counts (take lots of vitamins), arthritis, Dupuytren's syndrome (thickening of tendons in hands), loss of muscle mass, insomnia and low stamina and weakness for which I take a lot of naps.

From January, 2004, through 2006, I was on low-dose Peg-Intron maintenance therapy in order to postpone a transplant or at least buy time for other treatment options. Finally, I lost so much weight that I had to cease the maintenance program. Since that time, there have never been any promising treatments for me.

So little funding has been given to the Hepatitis C virus over the years, that I am doubtful that I will ever be offered treatment again. In all likelihood, the cirrhosis will progress to liver cancer or my liver will fail. There is a chance that I may require a liver transplant; but, of course, the new liver will become infected with the Hepatitis C virus again.

Beth

I have gone through lots of different emotions....Curly W. U.K.

2010-05-05T21:00:00.000-07:00

I was diagnosed with Hepatitis C in March 2010.I have gone through lots of different emotions. There were lots of ups and downs, and problems that I had never come across before.

My GP told me straight away, that she does not know enough about HepC.

I have seen a Hepatologist already, but I had some problems with him. He did not really care about me, and my GP arranged to see another one. I felt like I was just a number and not a person.

I have seen the new Hepatologist last week and this one was very understanding, and most importantly, listened to my problems and answered my questions. He took some more blood samples to find out my genotype, but I do not have my results back yet. I got passed on to a Hep Nurse straight after, and she explained the procedure of applying for funds to get treatment. In the meantime I have to have some more tests done to make sure I do not get even more ill on treatment.

I get stressed out really easy these days. In fact everything is stressing me out. Waiting for everything is the worst part of it.

I feel my body is so weak. I am fatigue all the time. I do not sleep properly and I have to rest a lot. This is just not me.I like to be an active person, and I want to do so many things.
I had symptoms, like joint problems for years, but it seems to get worse and worse. I suffer from diarrhea several times a month and feel that weakens me down even more. I get infections much easier and it takes me longer and longer to fight them.

I mean it is a good thing that I do know now I have HCV, but I am so scared.
I have found out lots of things about HCV, but I cannot tell anyone that I have it. Most people do not know what HCV is, and think you are highly contagious and back up from you, like they do not know you. It would be so good if I would find out how I was infected. At least if I knew, I could blame somebody for it. That might make it all a bit easier for me. I know that is not the right way to think, but everything is growing over my head. All these doctor appointments, my mum having a stroke, and state benefit problems stressing me out. I have no time for myself. It feels like I have a full time job. When does it stop? I want to get on with treatment and get this horrible virus out of my body. I want my life back.

2010-05-05T08:58:00.001-07:00

A bird doesn't sing because it has an answer, it sings because it has a song.

~Maya Angelou~

2010-05-05T08:54:00.000-07:00

Groups work to help homeless vets
Half of these Vets were labeled as vulnerable because of health problems ranging from Hepatitis C to emphysema.

2010-05-03T06:00:00.000-07:00

Please remember to send pictures of loved ones who have passed away for World Hep Day in DC. The date is FAST approaching. Mail them to lorren@hepcchallenge.org

WHD is on May 19th so please get them sent to Lorren today :-)

Continue with Support Groups.....even after treatment

2010-05-01T20:10:00.000-07:00

Hi, BettyV.

I’m sorry this has taken so long. I still have trouble concentrating with too many things going on around me. We are in close quarters in this small R.V. with my husband watching news every minute and I have no place to go for quiet. Anyway, I will try to write something for you tonight.

December 12th 1984 I was involved in a car accident which caused extensive damage to both legs. For three days they didn’t know if I would live or not. I was in intensive care three months and in the hospital a total of four months, which would have been longer, had I not begged my doctors to let me go home. My hospital stay involved many surgeries and blood transfusions but I survived. My recovery included two years of surgeries on my legs and learning to walk again.

Once recovered, I would donate my blood occasionally to help others. I received a letter from the blood bank stating that I have the antibodies for hepatitis c and can no longer donate my blood. I phoned the blood bank and argued with the poor lady who answered the phone. It was my understanding that if you have the antibodies for something that you had it at one time but your body has cleared it. Therefore, you no longer have it, only the antibodies. The poor lady was frustrated and I was upset that I could no longer donate blood. I finally agreed to never donate blood again but did not see any reason why I should see a doctor.

My children grew up and left home. I landed a very good job at Federal Express and worked there six years before my husband’s plant was sold. He made the decision to try to stay with the same company and applied for a position in Wisconsin. We lived there almost three years before that plant was sold. We relocated to Augusta, Ga. where my husband worked across the river in S.C. It was during this ten year period in Georgia that I finally learned what hepatitis c is and how important it is to see a doctor.

My general practice doctor referred me to a gastroenterologist who ran the test and confirmed that I had hepatitis c. I had no symptoms except some mild fatigue and my liver had no damage so we determined to do nothing except watch my condition until it was determined that damage was being done. I went in for blood tests every six months and was confident that my dr. and I had made the correct decision.

My husband decided to retire and we made the decision to go back to TN., back to the house we had been renting out all this time and I was referred to another doctor for my hepatitis c by my new general practice doctor. I ordered my records to be forwarded to the new doctor and went for my first visit. I had been sitting in the examining room for the usual fifteen or twenty minutes when the doctor came in, slammed my file on the table and literally yelled, “I don’t understand why anyone would refuse treatment for hepatitis c.” My previous doctor had written a note in my file that I had refused treatment. I was livid. All the tests were done again and another liver biopsy was ordered. I still had no liver damage, my copies were low and I agreed to go into treatment.

At the time I began treatment, I still had no symptoms other than mild fatigue and I was determined that this treatment would not interfere in my daily life. I had joined an online support group and had heard all the horror stories. I went spastic with my first shot because I drew blood and thought I had hit a vein. Thank God for that support group. I probably would have gone to the emergency room. I was set for the chills and flue like symptoms that I had been warned about but my reaction was mild. Each week I was more fatigued. I eventually found myself in bed most of the time. The metallic taste in my mouth and loss of appetite started early in treatment and I found that simply walking across the floor wore me out. I scheduled my doctor appointments for after noon so that I would have time to get ready because each step in getting ready wore me out. My personality changed from a mild mannered understanding patient person to a short tempered person who didn’t want to be around anyone. I was a miserable person who hated herself. My treatment took over every aspect of me and my life. In spite of all this, my doctor was happy with my lab results each month and I cleared the virus in 12 weeks. But 48 weeks is a long time and continuing treatment became harder as time went on. My husband would always be there to nudge me on.
I can say that God was also there with me. I was bored with TV. Didn’t have any interest in reading or anything else. I don’t know how it came about, but I wrote a poem about fighting the dragon. Then, I wrote another one. The words came into my mind and I felt I had to write them down. I had written several poems about dragon fighting when I met another poet online. He was very kind and asked to read my poems when I became brave enough to tell him I had written any. I held my breath as I sent them to him and I thought he was just being kind when he told me he liked them and that I needed to share them with others. I decided to test them out on my husband first and was surprised at his reaction. My poetry, written during treatment was published in December 2008.

I completed treatment two years ago. Even though I had a rough time of it, my experience was mild compared to that of others. Close to the end of treatment I began to have aches in both of my elbows. Now I have tennis elbow in both elbows. I still have bouts with brain fog occasionally, my short term memory is gone and there are times that I’m too tired to do things. In short, sometimes I still feel like I’m in treatment. I think it’s important to continue the support groups even after treatment is finished and successful because we do not get back to normal after stopping the drugs. Not over night anyway.

Vicki's Story

An Interview with Hope and Dennis

2010-04-30T20:49:00.000-07:00

Hepatitis C: Living Through Treatment Together

As a couple, Hope and Dennis have shared many years together. In 2002, their relationship was put to the test when they were both diagnosed with hepatitis C. Together they learned about the disease and together they went through treatment. I met Hope through the hepatitis forums, which can be great sources of support for people living with hepatitis. In this interview we conducted through email, they share their experiences with the ups and downs of living with hepatitis C. As you'll see, Hope has some strong feelings about treatment, but she thinks it's really important for people to know how tough it can be.

When did you begin thinking something was wrong?

We didn't really know anything was wrong with us. About 10 years before finding out we both had hepatitis C, we began taking naps because we got tired halfway through the day. As time went on, the naps got longer and more frequent. I remember feeling depressed and anxious, and having aches and pains. Never did my doctor put it all together, other than comment that I was always sick. Dennis was very tired, but not much else.

When did you know you both had hepatitis C?

Dennis is a disabled Vietnam veteran and has post-traumatic stress syndrome. In 2002, the Department of Veterans Affairs started testing all veterans for hepatitis C virus and Dennis tested positive. Then they tested me. I remember getting a letter from the clinic about my lab result and someone told me on the phone that I had hepatitis C but not to worry about it. She told me hepatitis C was just a virus like a cold and I didn’t need to do anything. I knew very little about hepatitis, other than an old friend had been treated and nearly died. I remember being very shocked and scared because it was same week that Newsweek came out with a front page article about hepatitis C. It seemed that whatever we read said hepatitis was a death sentence.

We both made appointments at the clinic, but we were told we couldn't start treatment for one year because we drank alcohol. We didn't drink excessively, but we had to be sober for a whole year. During the time we were waiting, I started using a computer and visiting websites and forums. Every site I visited pushed treatment or die. By this time, I knew what hepatitis was and was scared to death we were dying. I remember crying a lot and being very depressed because I thought we had to go through treatment or die. It was nerve-wracking.

Did you ever find out how you were infected?

We're not really sure how we contracted it. Dennis continues to take the blame for it because in Nam he sometimes was exposed to blood, and he did use drugs and get tattoos. I have no idea how I got it from him, if I even did. In my life, I've had plenty of surgeries and blood transfusions, but none of that makes any difference.

Tell us about some of your treatment experiences.

We started treatment in February 2003 and it was hell from the first day. We had to call the Pegylated Interferon hotline in the middle of the night because Dennis had fever and chills much like he had with malaria which he had before. Along with that, he had a massive headache and it continued through treatment for the full 48 weeks without any relief. We both had a low-grade temperature the entire year. We spent day in and day out suffering terribly. We live where it's warm, but even through the summer, we were freezing most of the time. We slept with an electric blanket, but the cold just seemed to penetrate our bones.

We both suffered from constipation and diarrhea, and right from day one, we had back pains and joint pains that were terrible and nothing like the flu. The brain fog was like permanent disorientation. We actually got lost when we left the house and had to go out together so we could help one another remember where we were going and how to get back.
I lost most of my hair. It was so thin. Before we started treatment, I had 16 inches cut off and donated it to wigs for kids. By the time I was done, I was nearly bald. It thinned but didn't fall out in patches like it did for friends on chemotherapy.

How did you explain all this to your friends?

I felt it was no big deal to tell our friends. I knew it wasn't easily transmitted so I didn’t keep it a secret that we both had hepatitis C. Big mistake. All the friends we had avoided us like we had the plague. Now the only friends we have are other "heppers." And that goes for most of our family as well. So we are pretty much isolated with no one left in our lives but our daughter, her husband, his parents and the two grandchildren. I used to have the house constantly full of company. We had huge parties, 20 people over for Thanksgiving, open house with 50 or more people coming by on Christmas Eve. No more of that. And honestly, we couldn't do that kind of entertaining anyway because we're way to tired and in too much pain. It did hurt a lot that when we were both too sick to even stand up, none of our friends would help us out. When we finished and they thought the hepatitis was gone, some called but I was angry and didn’t accept them back into our lives.

What were some of the toughest times?

It wasn’t easy getting used to giving one another shots. Then remembering to take pills on schedule got hard to do. We were told they had to be taken exactly 12 hours apart. And add the brain fog along with a zillion other medications, I finally bought a PalmPilot that I programmed to beep when it was time for meds. It beeped around the clock and Dennis swore he would break it with a hammer when we were done.

How was your appetite during treatment?

Dennis was able to drink supplements daily and drink water. I found I couldn't keep anything down, sometimes not even water. Every morning I would eat half of an oatmeal raisin cookie, vomit and then take my medication. If I took the medication first, I would vomit them, too. There were days on end when neither one of us could get out of bed. Our diet was so poor because we couldn't shop much, nothing stayed down when we ate, or if we ate and it did stay down, it wasn’t very nutritious. During the last few months of treatment, I was malnourished and had hyponatremia from drinking only water and not being able to keep food down. I finally forced myself to drink juices and eat pudding.

One of the tough parts of chronic hepatitis is fatigue. Was getting to sleep easy or hard?

I was so weak while treating that I fell a few times and injured myself. For the first 2 months, I was buzzing along, unable to sleep and would just lay there. The VA psychiatrist gave me several different medicines, but none of them worked. I finally went to my local primary physician and got onto Ambien and slept. Eventually we spent so much time napping, half of the time we didn’t know the date or time. I know I was pretty much running on empty and had no clue how we were surviving. Just taking a shower was enough hard work to make me tired enough to lay down and nap.

Did you ever think about quitting treatment?

About two months into treatment, was the first time we really considered quitting. After that, we pretty much discussed quitting daily. Every week we quit and each shot day came around and we would decide to do one more day, one more week. The sad part was as sick as we were, we didn’t really, seriously consider quitting as an real option. Oh, we threatened to quit but would never have done it.

You must have been so excited to finally finish!

As the last couple of weeks came up, we both caught the flu. The real flu. On top of treatment, it was about as rotten as anyone could possibly feel. Neither one of us did the last shot. We were just too sick.

What's your opinion about Riba Rage?

To me, "Riba Rage" is real and the stuff still grabs hold and we start arguing over nothing until I realize it and stop. Day after day we fought like animals. Screaming and yelling at one another over nothing. It was like having an itch you could not scratch. To say we were unhappy is an understatement. We were as miserable as we could be without being dead. At times we were so depressed we had to find reasons to live. Nasty poison to make us think like that.

It sounds like you have strong feelings about treatment.

I know some people need treatment. I just wish I was told about all the bad parts of treatment. As soon as the meds were done, I started to find little things that improved every day. Like my fingertips healing and my yeast infections clearing up. I was on about 60 pills a day and after treatment, I was able to eliminate two-thirds of them! So I recovered a little each day and seriously, for me, I feel like it was 3 years later when I finally felt the treatment was gone, but now I'm left to deal with all the problems it triggered.
If I knew what I do now, I never would have treated. I probably would have just never drank alcohol, kept exercising and eat a healthy diet. As it stands, exercise is almost impossible and all I can manage is a little Tai Chi now. I would never drink again anyway. And I do try to eat healthier. But none of it seems to make a difference. I am plagued with so many pain issues and illnesses and take way too many medications for my liking and feel like treatment ruined my life. Nothing is left of the old me.

So, how are you both now?

I think I've recovered more than Dennis. He has relapsed and it’s pretty obvious he is not well. He has had a FibroSURE test and now has stage 2-3 fibrosis where he had no damage before treatment. Dennis had three root canals during treatment and three more since. After treatment he has lost a few teeth and had gum surgery. The VA dentist told him it was all from treatment. Dennis also has to deal with gout and high ammonia levels. When his ammonia levels are up, he shows signs of dementia, often not knowing where he is or what he is doing.

Tell us about life after treatment for you and Dennis.

Well, it’s a lot of doctor appointments, lab tests, trial and error on medications and lots of waiting room time. Not a week goes by without at least three appointments for one thing or another and sometimes as many as six in one day. Nothing went back to “normal.” Nothing is the same. I don’t even feel like the same person and I find anger to be the predominant emotion I live with. Mostly, I am angry. We were not told of the possibility of 90% of the side effects we had and we weren't warned that treatment could trigger other genetic diseases we might develop later. I hate the deep depression and the anger and rage we live with. The only time we're happy are when the grandbabies are around.

A View into my Looking Glass.......Dottie's Story

2010-04-30T20:38:00.000-07:00

Would you like to take a journey down my rabbit hole?

(had picture of Alice in wonderland here)

I imagine that at this time you’re wondering why the ''Alice in Wonderland' reference? Well let me begin by saying that my journey through finding out I had HCV dealing with the fact, treating and the final outcome started as something completely surreal, much like looking through a looking glass into my own life . There I was simply going through life, working, raising a family, bought a house and was doing everything the way that I thought I should. Like so many people in this world I woke one morning and something simply wasn't’ right. Was it symptoms of HCV, no, and that is the part that still to this day still scares the crap out of me. HCV can live and breed, growing and eating at your insides, your organs, chipping away at your life expectancy and you never once know it.

So there I was off to the hospital, my heart racing feeling really scared. Upon arrival at the hospital I was checked in the heart problem corrected for the time being and the array of tests began. A nurse came into my room and asked me “why do you have low blood platelets”? The only thing I could think to tell her was “I don’t know." I had absolutely no idea at the time what a blood platelet was. I was checked into the hospital, tests galore, I had a cardiologist, a hematologist, for the mysterious blood platelets and a gastroenterologist. Not one of these doctors could tell me what was going on. After having a liver scan in nuclear medicine the tech there was talking to me telling me my spleen was enlarged and my liver appeared to be cirrhotic.

I asked him what this would have to do with my heart and he said as far as he knew nothing. A week later I was discharged and told to meet with the gastro doctor in 3 days and the cardiac doc in a week. That there were several tests run and the results would be in soon. The cardiac doctor told me to cut out salt and caffeine and gave me a prescription to regulate my heartbeat; he attributed a lot of it to stress and being a woman. Oh the joys of being a woman....

The gastro doctor told me to quit drinking, DRINKING!!??

I told him I didn't’ drink; you know the occasional margarita a few times a year and a glass of wine here and there. The man looked at me like I was a liar. I didn't’ get it. The hematologist was talking about a bone marrow biopsy. I went home that day, filled with questions, no answers though. I went back to the hospital 2 days later and got copies of my records. As I read through what basically made no sense, there it was HCV positive!!!

My point to all the above,

WHY DO DOCTORS NOT RANDOMLY CHECK PEOPLE FOR HCV!!!

There are several ways that people can contract HCV, and honestly I could care less how anyone gets it as long as they do everything in their power to get rid of it. Personally, after talking with my doctor, the best explanation that he and I could come up with was that I got HCV from a blood transfusion. I was in a car accident when I was 12 and it was years before blood was tested. ( no old lady jokes ) It is neither here nor there where it comes from like I said, but this is my story so I put this part in.

When I read the news that I had HCV, I did like so many other people do. I thought I had been handed a death sentence. I freaked out!! I cried, I thought my days were numbered and I set out to find exactly what that number was. Would I live days, weeks, months or years?

I decided that the Internet had the answer to these questions. So I clicked on every link I could find and read. In the meantime I saw my doctor and told him I wanted to get rid of this ASAP!!! My med's were ordered and I was waiting for my insurance company to approve them. Why an insurance company had the right to approve or deny my treatment was and is a whole different story that I won’t even begin to get into now. It should be a gimme your sick there are med's here you go. But anyway….

I found my way to a forum that you could post questions to and you could also read other peoples questions and answers. This seemed like a wonderful place to me. People that actually got together to help one another. Let me tell you all, what may appear to be a blessing can be your worst nightmare.

Try to remember that a lot of these people are on treatment and we will get into some of the physical and mental side effects of these med's in a bit. But also remember that many of these people are completely insane and their only reasons for getting to know you are to gather personal information about you and to in one way or another take advantage of you or try to hurt you. All I am saying is BE CAREFUL of what you tell strangers. Their kind words are nothing more than candy in the cyber world and you know what mom told you about taking candy from strangers. Then finally I found my way to Delphi. This place is filled with good information, by all means though be careful here as well, same reasons as above.

OK, so I am at work when my box of med's arrives. My insurance company chose to use a drug supplier that mailed my med's to me, it was actually quite convenient. They came every 3 weeks in an unmarked box simply labeled refrigerate upon arrival. Many people believe that once they begin treatment that they should quit work and crawl into bed, I have to say I find this to be the absolute worst advice that anyone could take. Granted there will be times that you will want to crawl into a hole and die and other times that you just can't make it, take a day or two off, but keep your mind challenged and on other things besides feeling like crap.

In the long run it will keep you sane, or at least close to the level of sanity you started with. My treatment lasted 84 weeks, and I averaged about 2 days off a month. I do not have a job where I am working with dangerous equipment or in a field that peoples lives are in my hands. Had that been the case then my above advice might be a bit different. The job that I do have is managing an office, one of the highest volume insurance agencies in my area. So yes attention to detail was important.

Onto 'The Treatment' WOOOO HOOOO this is fun NOT!!

So the big night arrives, I have my arsenal of things at the ready that I was told I would need. I double checked everything, blankets, heating pad, some Tylenol PM and gave that up quick, a bucket to puke my brains into if the need arose, my shot and my riba. OK I was ready, I popped my pills hopped online and was ready, I admit the shot confused the hell out of me for a while. I had spent some time talking to my new online friends for a while about the “Big” night and I knew they would help me through any questions might have. I was told by numerous people that the first shot was the hardest.

So I was prepared for almost anything, I thought. Knowing that the effects of the shot would take a few hours to reach the worst of what I was about to endure, I decided that Friday nights would be the best time so that I had the weekends to get over the worst of the effects. I mixed the absinthe aka peg-interferon ( I know bad comparison but who ever said I was right in the head ) and poked myself in the thigh. There done, now I was left to wait…..

I sat in chat for a few hours and then the feverish feelings began to set in, they turned to a full body shake and… well…. I thought I was about to meet my maker. But alas, I was just fine. Yes I felt like crap for the next day I ached a bit and wound up in bed for the day. But I knew that was the worst and the rest should be OK. Right? I think not. Like everything else in this world there are good times and bad times.

Treatment was no walk in the park and the longer I was on it the weaker I felt. My blood counts bottomed out. My platelets were almost nonexistent. I wound up not only doing the maximum amount of interferon and riba but got to throw a bunch of yummy other drugs into the mix. Neupogen and Arenesp, Arenesp is basically a long lasting form of Procrit. On more than one occasion my doctor wanted to reduce my interferon due to my blood levels dropping so low. from the beginning my doctor and I had an understanding, I wanted to do this treatment once if at all possible and not waver on the dosages.

I had a personal belief that if my dosages were lowered or I was taken off treatment my system had the chance to build an immunity to the drugs and there was no way that I was going to chance that. Now you have to understand that this is just my belief and there is absolutely no medical research that even hints that I am right. My story my beliefs if you think I am insane you may be right but write your own story….

OK now that you now one of my theories time for another, the protocol for treatment is something like you are suppose to clear at week 12 and then continue treatment for an additional 36 weeks. Well folks, what if you don’t clear at 12 weeks? This bothered me A LOT.

I made an appointment with my doc to discuss this with him. I told him that I felt that no matter what week you cleared at, if you cleared in the first place, that I thought that the additional 36 weeks should begin then. He pretty much dismissed me at this point and said that he was the doctor and would decide what was best for me…. Blah blah blah….. yay you’re the doctor, we were talking about my body not his. So the pcr’s began… my counts were coming down but I was not clear. Not at week 12, 24, 36, but alas at week 48 I cleared. so doctor know it all said do you really want to go an additional 36 weeks from now? My answer to him was a clear and direct YES.

At this time, he now had to apply with my insurance company again for extended treatment. He could show that the med's were working just at a slower pace that optimal. He sent me home with 2 more shots that he had as samples and another bottle of that wonderful riba…. Insurance approved and I was set for my additional 36 weeks.

Be right back I need another cup of tea to finish this……

OK I’m back, hmmm how was I feeling at this point? Like road kill!! Seriously, my hair was dead, I chopped it all off, the only way I could sleep was with the aid of Ambien, the pain in my bones and joints was so bad I was eating Vicodin like candy to function. But dammit I was not going to let this stupid HCV beat me. I had 2 platelet transplants because they dropped as low as 10k and the average number of platelets in a persons body is suppose to be around 250k. the closer I got to the end of my treatment the less and less I wanted to take those friggin shots. I hated them all of them. The neupogen and arenesp burned like hell, made me hurt like you wouldn’t believe.,But I still had my friends on Delphi.

I made chat each and every weekend to laugh and carry on. This was my escape from the pain the misery. I met several wonderful people and several real snakes in the grass.

I can honestly tell you that the group of people that I met and know from this chat room and forum were the absolute best!!! Bette our legendary forum host here has become not just a friend to me but she will forever be family in my heart of hearts. There were nights that I was ready to give in and just simply quit treatment.. I would call her and be all whiney. She would offer me some cheese to go with it and tell me suck it up take your damn shot!!! There were other times I called her weak and just feeling defeated, and she would listen and comfort me. I am truly blessed to have her in my life.
So I guess this about it, I am still clear, 2 years YAY ME!!!!
Time will tell what our fate will bring, but if my story brings you nothing else. Remember its your life, live it!! It is short and make it last as long as you can for never know what wonderful people will enter your life and forever change you. Treatment sux but if it works you have extended your life. I melt inside every time I look into my daughters eyes and know that because I sucked it up and made 2 years of her life a little harder by watching mom fall apart.. I have quite probably added 20 years to our time on this planet. Be well all

Dottie

Brain fog did clear up........ my story. Joe

2010-04-30T08:54:00.000-07:00

In 1999, I noticed that I was getting fatigued quite easily, but chalked it up to my excessive drinking. I made an appt with my PCP around September of that year to make sure nothing was wrong. He noticed that I had never had any test for Hep a, b or c and included that in the test. The Hep C came back positive. He sent me to a specialist to confirm that I had Hep C and it was confirmed.

He also told me that if I don’t do TX I will die. At the time I didn’t know anything about Hep C and figured I’d better do it. However, because of my drinking (alcoholic) he wouldn’t let me do TX until I had stopped for at least 6 months, no way was I going to do that.

Over the next 5 years I became progressively worse with the fatigue and memory problems; I still attributed to my drinking. After drinking for all of my adult life I figured it was catching up to me and decided I had better stop if I could. In April of 2005 is when I had my last drink (very proud of myself for that). After 10 months of not drinking and still having major fatigue problems I decided to do TX and get it over with. I started Feb. 2006 and finished Jan 2007. I was 1a and have been SVR since week 12 of TX.

I was supposed to have flu like symptoms, it was much worse than having the flu. I was on my own with this except for my wife being there for me. I knew nothing about forums or a support system for this. I thought I was going nuts, I was screaming at everyone for no reason.

Once TX was over I could hardly wait to get back to normal and after a couple of months I felt no better. I called the NP up that was monitoring me and told her that. She said it may take up to 6 months before it was out of my system. The 6 month point was no better. I made an appt with her and listed the many things that were not right with me, major fatigue, no short term memory, mental confusion and brain fog, could not stop sleeping etc.

She told me she never heard of such a thing happening to someone after TX. HUH?

I found out about forums for Hep C in August of 2008 and finally started getting the low down on Hep C and TX. I found that I did not have to do TX or die; in fact all my liver functions were great. My ultra sound was normal; they didn’t even have a biopsy done on me. I would have chosen not to do TX had I known that. I would have kept a close eye on my liver and held off to see if they would come up with a real cure.

My 3rd year post TX went by in January and the brain fog did clear up which in itself a great thing. But I still get fatigued easily and require a lot of sleep and naps throughout the day. My short term memory is shot and a 20 minute drive wears me out.

My problems with this disease are the lack of info out there about it. The mis-information being told those that have it is still the same, treat or die. The denial that the symptoms after TX is not related to TX; although I now see that they are admitting to some possibilities of TX causing some problems; has to be labeled as such.

I cannot work as I was an electrician which is a very demanding job, but if I were just selling popcorn I couldn’t do that either. I can’t even do volunteer work because I never know when I’m going to just poop out. I am lucky that I came down with a shoulder injury in 2007 and was able to go out on SSD for that. I know how much of a struggle it is to get SSD from the after math of TX.

I feel like I am 80 years old instead of 59. I was an IV drug user back in the late 60 as many of my friends were. Most of them have Hep c too.

Like I said use what you want or do use anything at all, I’ll let you decide on that.

Sincerely,

Joe Walsh

2010-04-30T06:22:00.000-07:00

Hepatitis C Survival Guide A-Z - this web site will will be made available through various parts of blog
Just incase you need it quickly and there's too many stories inbetween
In my opinion, it's the best site for people on treatment.
It was created by three outstanding women; Trishamn, Lacey & Freyja
Without this guide I don't know how I would have gotten through treatment. Thank you

We need to get over the stigma....Inspirational Story from Scotland

2010-04-30T06:04:00.000-07:00

I don't really know where to start with my story as so many people have went through so much pain and hardship because of having this horrible virus. I feel I have been very fortunate not to have so far. Apart from a few episodes of real joint pains that come and go.

I am a 53 year old mother of three grown up children and have also brought up two step children. I have seven grandchildren and another one due in August. One of my daughters has had problems with alcohol and drugs and has for a number of years; as a mum it breaks your heart to see someone you love wasting their life. She is on the mend now, however, I have two of her three children living with me as both their dads died through drugs within months of each other and my daughter just couldn't cope. She lost herself more in drink and drugs. I have been caring for them for over a year; one is 3 yrs old and the other is 13 years old; it can be difficult at times as I also work full time with young adults with learning difficulties but I love them dearly and we manage.
Through all the troubles and hard times we have been through as a family I have always said "at least we have our health".

In early February this year my youngest daughter phoned me to say that her Dad had been in touch to say he had Hep C and I should be tested. We haven't been together for over 16 years and don't keep in touch only through our daughter. I spoke to my husband about getting myself tested and we decided I should as I would just worry. It would put my mind at rest. Anyway I was really healthy so I wasn't really worried about the results. The nurse I spoke to told me there was no cure but I could be tested which I was.

Three weeks later on the Friday night she called and told me the tests were positive, and I would probably get an appointment to go to the local hospital for a day bed. I made an appointment to see my Doctor. I just couldn't believe it. I was in utter shock the whole weekend.

I have a very dear friend that I have known since school who had been through treatment twice 15 years ago for Hep C and eventually cleared. She was also very active in fighting for the rights of people with this virus as she suffered in the eighties. She won’t mind me naming her. She is called Feyona and she has a wealth of information about this disease, so I knew this nurse was wrong.

I phoned her to tell her my news she was devastated; if it had not been for Feyona my weekend would have been unbearable. I was so frightened and although I had my husband he didn't understand, I felt so alone.

Feyona talked me through what would happen next and even emailed me a letter including questions etc. that I was to send to my local Doctor prior to my appointment on Monday; so that he would know what I wanted to ask him. This she said would save time. She told me to ask for copies of everything. My Doctor told me he knew very little about Hep C but was sending away more bloods to find out if the virus was active. Another time of waiting then he called to say it was and I had a viral load of 34,951, however, my liver function tests were not too bad and he didn't know the geno type yet.

I was advised by my friend not to use the local hospital as the one in Dundee had specialists in this field so I asked to be sent there. A couple of weeks later I attended the new hospital. They did all the tests again and also did a fibro scan the scan showed moderate fibrosis. I was to attend again to have an ultra sound in a couple of week’s time. The day before I was due at the hospital I received a phone call to say they had my blood results back and they showed I had been exposed to the virus but there was no active virus. They said they thought my body had cleared it by itself.

As you can imagine I was over the moon. I still had to attend for the ultra scan because of the fibrosis and they had found high ferritin/Iron which they thought may be hemochromatosis so wanted to look into it; also do my bloods again just to confirm I had no active virus.

I then received a call at work to say they had made a mistake I did have a viral load of 52,000. I just fell to bits. It was like a double whammy; getting my head around it the first time; coming to terms with it and then the relief of not having it, then I did all over again.

I had to come home from work and ended up going to the doctors crying my eyes out.

It just felt so unfair.
I have my original appointment to see the professor and get started on treatment on July 23rd so that's as far as my story goes at the moment.

Only my youngest daughter knows I have this virus I haven't found the strength to tell the rest of my family yet especially not my daughter with the addiction problems. I have told my granddaughter who is 13 and lives with me. She is amazing and keeps me positive by saying Gran this isn't your fault and we can beat this. She has researched it on the Internet and knows all about it don't you just love them eh!
I do realize I am very fortunate to have the National Health Service here as it must be so difficult when you have the added stress of money when you are going through what is a really stressful situation to begin with. My heart breaks for some of the people who are struggling to pay to get treatment.

I feel there is not enough known or addressed about this illness. My friend has fought for 20 years here in Britain to help people deal with all sorts of issues; even she still feels no-one is listening, lets hope this changes soon.

We need to get over the stigma and find the strength to stand up and be counted and listened too.

Keep up the good work Betty Love from Bonny Scotland

Ann xxx

It’s my life ...Denise

2010-04-29T10:47:00.000-07:00

Hi - I am recently diagnosed. On my 3rd week of treatment; which as of today I have to stop. I don’t know exactly how I contracted Hep C; however, I do believe it was thru 1 of 2 blood transfusions I had back in 1976 and 1984. I have never used IV drugs; been married to same man for 20 yrs; worked in health care field for almost 30 years but never dealt with needles. I had no symptoms. I did have problems with my digestive tract so I joined a research study where they did numerous blood tests which came up possible for Hep C. I had to continue from there and had been seeing a dr who just didn’t communicate. I decided today I cannot take the treatment any longer. The side effects are so bad I cannot do my normal daily duties. I take care of my disabled mom who is 78 in a wheelchair; a 9 yr old grandson and of course hubby. They have been neglected these past few weeks that I’ve been on treatment so I quit. I don’t know much about my disease. All I know is chronic and geno type1 but I do intend to get more info from dr whether he likes it or not. It’s my life and I need to know more facts.

Thanks for listening

Hope, Pain, Sorrow.....Poem By Margie (A true Gift)

2010-04-29T05:27:00.000-07:00

Here's one for you Betty...this is what the silly insomniac heppers do when they can't sleep
please feel free to use it in your blog if it helps.
hugs margi

I went to the doctor, my tummy is ill
He said I was fine and gave me a pill
I went to the clinic cuz my side hurt bad
The nurse was busy and just got mad
There s nothing wrong I heard her say
Just another patient and another day
Doctor, Doctor cant you see
its not in my head
Ive got Hep C

She went to the doctor a mother of three
Her neck was swollen her skin itchy
Cancer you have and these drugs will do
That Non A Non b thing is nothing to you
Cancer didn't kill her, the drugs they used did
They said good bye, each one of the kids
Doctor, doctor cant you see
Its not in her glands
Shes got Hep C
I went to the doctors my platelets were low
You're fine, have surgery, we really don't know
But this pain in my muscles and pain in my bone?
The time spent trying to get well, I want to groan
You're young, you're healthy you will heal real quick
I'm actually feeling sick sick sick
Doctor, Doctor can't you see
Its not in my head
I've got Hep C

He went to the doctor his skin was yellow
You drink too much you silly fellow
He gave him a lecture and a shot of B-12
His history as a vet, he forgot to delve
The aches and the pains he brought home from the war
He was too proud to complain he had survived much more
Doctor, Doctor cant you see
Its not in his bottle
Hes got Hep C

She went to the doctor her body ached and groaned
Her stomach was bloated, her head just moaned
I'm sorry Miss I am really not sure
But your card expired and your uninsured
We will send you to a clinic 100 miles away
You will wait several years for a doctor they say
Doctor, Doctor can you please help me
I have no job or money Hep C

He went to the doctor the best in town
He treated three times but it wouldn't go down
Dying might be a better idea
Than injecting more interferon into here
The doctor he told him, no more for you
Writing out your will is all that's left to do
Doctor, Doctor cant you see
My whole body is broken
And I've got Hep C

We are children, parents, husbands , wives and friends
It doesn't matter how it got us, it just did in the end
Some want to judge, some want to run
But curing and healing can only be done
With compassion and research and lots of trials
To cure this thing is a road of many miles
Doctors, lawyers, politicians, you want to poke
We have hep C and we need some hope
You argue, you fight, spend money on might
Your people are dying at home in a fright
We need your help, your compassion and concern
We need the misinformed to try and to learn
We don't want your pity, we want to feel well
We have the story that is each of our lives
to live
and to tell

Peace to all

Being Genotype 2.......Hilltopview

2010-04-29T04:46:00.000-07:00

Hi there. I am recently diagnosed Chronic Hep C. Low viral load 12,000 and genotype 2. I haven't been to see gastro yet but scheduled for May.

Since finding out about this virus, I have read a lot and made some radical changes. I've changed my diet, stopped drinking alcohol, caffeine, etc introduced meditation, yoga, EFT, and a range of alternative therapies.

Initially, I totally freaked out, I was gob smacked by the diagnosis. I was sitting in the small office with the doctor while she went on and on about the results of enzyme testing and all that. When she first mentioned Hep C, all I could think about was vitamin C lol! - while the ramifications were starting to swirl around in my head. I left her office in total shock. That was around the second week of March.

I have spent a lot of time reading, researching and adopting things that I feel will have a positive impact on my health. Not all of it has been easy. I have two young boys which are making all these decisions stick, though. Mind you, it's only been about a month so far. But, so far so good.

I'm now feeling probably the best I've felt in years. No headaches, more energy, less foggy brain.....

Today I got the news about the Genotype 2. I was surprised at this result as Genotype 1 is more prevalent in Australia. (Read that info from this website; really appreciate it as a good source).

My husband has been great, really supportive but I'm sure it's been really hard for him. He's seen how well I've been lately and I think that's a comfort.

Anyway, blah, blah, blah....don't know what the gastro doctor will recommend next, but I'll just take each day as it comes. The gastro doctors have all been at an annual International conference in Venice. The one I am meant to be seeing has been stuck over there because of the volcanoes and flights being cancelled. Poor thing; I wouldn't mind getting stuck in Venice.

It's been great to find a site that offers support for Hep C sufferers and a place to share. It's not something I want to update my facebook status with - that's for sure! lol.

Well look forward to meeting you and sharing the journey.

Hilltopview

LIVING WITH HEPATITIS....by Curtis

2010-04-29T04:37:00.000-07:00

I was diagnosed with Hepatitis C in June of 2006. It has been a real challenge everyday. Because of the disease I have cirrhosis. The doctor found that I had cirrhosis after a biopsy of my liver. He then said that there was nothing that could be done to help me and that usually in cases like mine there is a fifty percent of a five year survival rate. I sought help at an upstate university that is well known for their care in liver disease. I had to go through another biopsy and the findings were the same. I went through the 48 weeks of treatment plus an additional 28 as a maintenance trial to slow the progression of the cirrhosis. I had to stop because I could not deal with it any longer. My tough guy ego was gone. I became so depressed and had lost over 60 pounds. Then I sought counseling to get through the tough time. I continued working through all the treatment, but eventually had to go on medical leave. I could not think clearly and the fatigue was unbearable. Now I have thyroid problems; I am now diabetic; severe arthritis in the spine; cirrhosis and now on top of all this I lost my medical insurance. I can't afford the insulin and I have been not going to the doctors on a regular basis. Everyday I wonder what is next to knock me down and when is it going to happen. I have no idea at all of how I contracted Hep C; no drugs, tattoos etc.. But one thing comes to mind is that when I was in the service, back in the seventies, I was given shots in the arm via air gun injection, which might be why the doctors ask when I was in the service. There are a lot of things that I might have left out of my story but I have to end it now. Too tired to continue typing. It has been hell for the last 4 years to best sum it up and kind of not wanting to feel like this to much longer. I just wish the treatment would have worked for me.

Thank You

Curtis Hadlick

Be grateful for every day.....ADRIENNE’S JOURNEY

2010-04-28T14:18:00.000-07:00

My name is Adrienne and I would like to share with you my transplant experience.
I wish to dedicate this chapter to my husband Hank for his unconditional love, devotion and support while I was going through my medical ordeal. To my family for always being there and never judging me. My best friend Linda who listens to me through my many ups and downs. My transplant surgeon Dr. B for his steady hand and kindness. Dr. G who saved my life. Tina, my transplant coordinator without whose guiding hand I would have been lost. To the doctors and nurses I have met since coming to UCLA. Last, but not least Elizabeth for without her none of this would be possible for us to share with you.
After a hernia operation in 1994 I was diagnosed with hepatitis C. In 1995 at the age of forty five I met my husband and life mate. We went back to his house to talk and have coffee. On his coffee table I noticed a book, the cover stated Hepatitis C. I asked him if he had hep-C. Hank was the first person I had ever told about having hepatitis C.

Shortly afterwards we were married. Soon after this I began feeling bad, so my husband took me to the doctor. There were a battery of tests and they discovered I had cirrhosis of the liver.

My husband had used interferon and it helped him, he is still undetected to this day. I did the treatment for a year with no side effects, but my liver was in the end stage by this time and I had been in and out of hospital many times. Dr. T. referred me to UCLA where I meet Dr. G. the man who would save my life. He told me my liver was so far gone, that the only choice I had at this point was to get me a new liver.
Well, you face many demons when you know you are dying, so I made my peace with God and left it in his hands. I was in hospital several times after I had been placed on the waiting list. I went through all the evaluation tests during one of my stays; this was before the MELD scoring system was in effect. I didn’t think I would make it very long. It was a real downhill slide as I didn’t think I would get a liver. I was no one special, why should they give me a liver and not someone else? That is how I felt! Then Hank said something that blew me away, it was simple. He said “Adrienne, God didn’t bring you this far to drop you on your fanny now!” It was the truth!
On February 10, 1998 around 10.00 pm the call came, my husband answered the phone it was Barbara N my pre transplant coordinator. When we got the call needless to say so much goes through your mind at a time like this. Do I have to have it? Will I live to see another day? The words of my husband came to me again at that point I put myself into God’s hands.

We got to the hospital around 11:45pm and were brought right up to a room a doctor came in to tell me they were running tests on the donor’s liver which was being flown in from Arizona. After more test were run blood work, EKG, etc; all was well with the liver except it had hepatitis B antibodies, but having hepatitis C already meant it did not play a big role in the decision to go ahead. At this point I only remember bits and pieces of what happened. But, I do remember the operating room with all the doctors and nurses. I remember joking a lot with them that is something I do when I am nervous. Then, off I went to sleep…

I was in the ICU hearing muffled sounds in the background and trying like all heck to open my eyes, but I couldn’t no matter how hard I tried. I remembered thinking they will never know I’m alive if I can’t get my eyes open. Thinking about it now is funny, but it seemed at that time to be a matter of life and death to me. I must have been struggling a bit because there were restraints at my hands then I got my eyes open and saw my husband for the first time. “I am alive”! “I am alive”! I kept repeating. The thing that had scared me the most about the whole transplant was not rejection or how the operation went, it was just not dying on the operating table and not being able to say goodbye to my husband family and friends.

The first day on the liver transplant floor is a day I do not really remember. The second day I was ready to try and get up. I wanted to get my life back to normal as soon as possible. Yes, it hurt a lot but by the fourth day I was walking down the hall to the laundry area getting my own bedding and making my own bed. I liked my bedding a certain way and didn’t want to give the nurses extra work they already had enough to do. The nurses on the floor were fantastic and their care was terrific.

Now I was over the three day period and from that day forward I never gave a thought in my heart that my new liver would reject, it felt right at home. Everything started to confuse me I had never used a computer, so I had no one to talk to who had been through a transplant. If my husband hadn’t been there when the medications were explained to me I would have been lost. It is so important to have family and friends when you are going through a transplant.
Well coming home was a little harder for me because I had to spend my days alone Hank was working as hard as always. There was a great deal of bandaging and cleaning of the tube area and getting used to all the medications. Everything went wonderfully; the clinic and the coordinators were just the most supportive people you can imagine.
Since my liver transplant in 1998 I have been doing very well; the energy level was a little less than before but I am so grateful for every day. In 1998 treatment was not the norm for post liver transplant patients who have hepatitis C.

In April of 2002 I had my first rejection episode after a year of interferon treatment, which had worked for me. I had been undetected since May of 2002. While I was in hospital I was told a second transplant would be needed. I was shocked to hear this. So, all my evaluations test were done again; my rejection was now controlled, but I have been in chronic rejection since that time. I was relisted for a second transplant in October, 2002 and am still waiting, and waiting and waiting…just like a little energizer bunny.

I have my good days and bad days but all in all it is not so bad the second time knowing what to expect and also having the knowledge now. The first transplant I didn’t even own a computer so I was alone except for my family. I am so grateful to so many through the years and especially now being able to help so many in need that have just received a transplant or are on waiting lists. Giving back is the most important part of my life. Besides my family this is what I do and who I am. The things I have learned is live life to the fullest…be grateful for every day, helping others enriches your life and being blessed with a great family and friends.

Live on my friends and thank you John with all my heart for the “Gift of Life” you have given to me

LACK OF AWARENESS STOPS HEPATITIS C TESTING:

Hepatitis C can be detected with a simple test it is a potentially life-threatening viral disease of the liver transmitted through blood and blood products. It is the most common blood borne disease in the US. Over time chronic infection can lead to cirrhosis, liver failure or liver cancer.

"This blood may contain hepatitis or other viruses" and it did............

2010-04-26T11:40:00.000-07:00

My name is Candice and I'm 59 yrs old. I worked as a pediatric RN until I was 45, when I started having pain all over. I went from Dr to Dr and ended up with a Rheumatologist who diagnosed me with fibromyalgia. I was put on pain meds and had my blood tested every 3 months; went on for years. At one point I could barely walk from the bedroom to the couch without becoming out of breath. At age 56 I decided to start riding lessons and bought a horse to get some exercise. I started feeling better physically, but still couldn't work. At 58 I decided to get a facelift, hoping it would make me feel younger. The surgeon did several blood tests prior to the surgery, including HIV, Hepatitis A, B and C. I was shocked when he called and told me I had Hep C. I had 2 pints of blood transfused when I had a c-section in 1978, and I still remembered the warning on the bags-"This blood may contain hepatitis or other viruses".

I had told every Dr I went to about it and no one ever tested me! I asked why after the diagnose and was told that my liver enzymes were normal. How could this happen to me? I never did IV drugs (which is what you're taught is the cause of Hep C). Since the diagnose, I have done a lot of research and have decided not to treat with the current treatment, which is 40% effective at best for my type 1a. I don't think I could make it through the tx with the pain and depression I have. So I am waiting for a hopefully less toxic and more effective tx. I was also concerned with the lasting effects of the toxic cocktail. Meanwhile I am not drinking, eating healthier and taking herbs and supplements. So far my liver is in pretty good shape, with grade1, stage 0-1. My husband of 15 yrs tested negative. So life goes on. My Dr says I will probably die form something else. I am in constant pain, but manage to push through it and live a decent life. My positive attitude and spirituality help me through.

2010-04-26T09:47:00.000-07:00

Get The Facts About Hepatitis C Viral Load

Think A High Viral Count Means Advanced Hep C?
Maybe Not.......

There is always hope.......Daryl

2010-04-25T07:33:00.000-07:00

So many have been through some incredibly tough times,and yet you remain so strong, and such a positive force here for others. I an inspired every time I come here, or to Betty's blog.

Without the inspiration and love that you all give so freely, I could not face my own challenges, however much they pale against the battles that others have, and continue to face.

You are all amazing people, with amazing stories of courage and strength. Who could not be touched deeply, and motivated to carry on, with reading about your experiences.

Life has it's share of ups and downs...Oh yes. You all have reminded me to keep my head up, be strong in the face of adversity, and remember to cherish life and to have hope...even when it seems like there is none.

There is always hope, and around you all there is always love.

Some thoughts I wanted to share with you fine people.

Love you,

Daryl

Caroline's Blog Within a Blog.....to be continued

2010-04-24T16:53:00.000-07:00

TUESDAY, JANUARY 26, 2010

First time for everything....

So this is my first time writing a blog. It will be the first time I also talk about my Hep C. I have lived with this now for about 30 years, I figure, and the time has finally come to try and deal with it. I will go next week for my first visit to try and get enrolled in a new Study to treat and eradicate this viral timebomb that I have been worrying about for 10 years now. I'm nervous, anxious, excited. I will try to keep this updated with my feelings, troubles, etc that go along with this long treatment.

As a side note, it's bright and sunny here, but they forecast ran this evening. I am hoping they are wrong. :)

TUESDAY, FEBRUARY 2, 2010

First appointment for the study...

So today I had my first appointment with the medical research group that will be doing the study I'm trying to get into. I had thought I might actually be starting the treatment today, but the visit was the first of their screening process. Guess they need to make sure I qualify for their study. My liver doctor is helping to run the study as well, so I had assumed I was a shoe-in. Anyways, they took about 7 tubes of blood, and did an EKG and a physical to make sure I was ok. My bloodwork will take a week to get back. At first they told me it could be as long as 8 weeks before I could start up on the treatment, but because I am a patient of the study doctor, it might go quicker. So, I probably won't be on the juice until next month. One thing I am hopeful for is that my liver biopsy from 2007 is sufficient for them. They want one every 3 years, and it will be 3 years to the day next month. I REALLY do not want to get another one so soon. The thing that was a little un-nerving was when they read the consent form. It had pages of possible side effects (I guess some aren't just possible but most likely probable) and how they can try and deal with them all. It went over the amount of pills I will need to take daily. I new I would have to take some pills, but they said it could be as much as 15 pills a day! So going from taking no medication daily to 15 will be interesting. My stomach is upset just thinking about it. The other thing that was interesting was how I would have been required to take birth control pills, even if I had my tubes tied. Luckily, (I say this now), I had a hysterectomy 2 years ago, so I will not have to take those pills on top of the others. Guess they can't take any chances that a woman might get pregnant in the study, as the baby would have to be aborted.

So for now I wait til the next phone call, which will be next week. I still need to get a couple more tests done, but none are invasive or painful. I will update this when I know more.

FRIDAY, FEBRUARY 19, 2010

Last test before the study starts...I hope.

Got a call from the research group. All my blood work came back, and the results were all within their boundaries. I needed to go get a chest xray next. I asked about the liver ultrasound, and they said it would not be needed. And, they said my liver biopsy from 3 years ago is sufficient as well. So I ran down, got the xray, and now am waiting again to hear what the next step is. I believe, there are no more prelim tests needed. The next visit should be for when we actually start on the meds. She said it could be as soon as next week. It's getting a little scary now, knowing it's coming up so quick. I'll post again, when I have more to report.

FRIDAY, MARCH 19, 2010

It's begun...

Well yesterday was the big day. I have started my treatment. I took my first interferon shot. Was very nervous about the shot...I hate needles. It's a shot/pen device though, so the needle was very short and very thin. I decided rather than having the nurse do it, and then telling my husband how, I would bite the bullet and do it myself. It was a piece of cake. I went home and took my first dose of Riboviron, had lunch (they say it's best to take that stuff with food) and then went home. By evening, I felt like I had the flu...chills, aches, and a headache behind my eyes. I took a nap, had dinner, and then noticed I was hot. I had a fever too. Took a couple tylenol, and went to sleep. Today, the chills/fever are gone. Fell pretty good...have a small headache, but nothing bad. Hopefully, thats the last of the flu-like symptoms I will feel until next week for my next shot.

They packed me up with all kinds of stuff, and it was overwhelming. I have an electronic drug diary I have to use every night to input what pills/medicine I have taken. I have to make sure I take my blood pressure the day before my next injection. I have to note all over-the-counter stuff I take to combat side effects. Today, I don't feel so overwhelmed.
While I'm glad I no longer am waiting to start this thing, I'm apprehensive about what is to come. Guess I'm just a worry wort.

MONDAY, MARCH 22, 2010

So far, so good...

The weekend went pretty well. I am doing my ribavarin doses, twice a day. Have not had any bad side effects from it yet. It seems so far, the only bad reaction was to the interferon shot, and that only lasted 12 hours. I will keep my fingers crossed that is the worst of it. I do seem to feel a little itchier than normal, but the little bit of a headache I have had is gone. No digestive problems to report.

I am not a pill taker. I have never been on any prescribed medication, except for antibiotics when they were needed. It's quite an adjustment for me to now have to remember taking pills twice a day. It will be even more annoying when I start taking the 3rd drug, which I will need to take 3 times a day.

Well thats it for now.

FRIDAY, MARCH 26, 2010

TGIF!

Yay it's Friday. What a long week. While I am not having any troublesome side effects so far, I am tired a lot. Been taking naps in the afternoon, and then sleeping through the night as well. Thursday was my 2nd injection. Since I knew more of what to expect, it went along better than the first shot. Speaking of my first shot, I have a bruise there. Been going on a week now...it doesn't seem to be fading either. I asked my doctor about it...they said if there is no pain, then don't worry. I have an appt to see them next Friday. I'll see if it's still there at that time.
I have all these things I want to do this weekend. I'll see if I'm not too tired to do them all. :)

Wednesday, March 31, 2010

So things seem to be going well. I have not been overwhelmed with any crazy side effects yet. I worry something will happen down the line, but so far nothing is too bad. I've been very thirsty, so trying to drink lots of water. I normally have caffeine free diet pepsi, but I've been so thirsty, I find I can drink a 6 pack easily. Don't want to drink that much soda. Of course, all the drinking is also making me pee more often as well. Been noticing my skin seems to be very dry, so using more skin lotion. My initial injection site still has a dark blue bruise...gonna have to have it checked out this Friday at my bi-weekly checkup. I've also been very tired. Been taking naps in the afternoon, and still am able to sleep through the night. Have also been getting out of breath easily...I recover, but that is a new thing to me as well.

Not sure when I will know if things are working yet or not. I'll ask this Friday and find out more. But so far so good. Have not had to miss work or not do anything I wanted to do.

Laterz....

MONDAY, APRIL 5, 2010

Another shot, another day...

So took my 3rd interferon shot last Thursday. Did this one in my thigh as it seemed my stomach area was getting kinda sore. My jeans are a little snug in the waist. :) So prepped the area on my thigh, stuck the needle in and...eeek! Forgot to set the dosage on the syringe. Had to pull the needle out and do that, and then stick again. Won't forget to do that again! It seemed to burn a little this time when I pushed in on the plunger. Other than that, it's ok...no bruising, no swelling. It does itch from time to time. Felt a little crappy later in the day...sensitive skin. Did not get a fever.

I've been getting itchy...scratched a couple spots on my back, and have one on my chest as well. I will have to make sure I use my eucerin lotion to help stop the itchiness. Still feel pretty tired most of the time.

Found out some interesting data on my Friday visit to the clinic. My starting viral load number is 4,260,000. In order for this treatment to be considered working and effective, that number needs to drop 2 log. That means it needs to drop 2 decimal points to something like 42,600. This is measured at week 12. However, I will know if something is happening this coming Friday. It probably won't be dramatic, but I would expect to see a drop of some kind. I will also know if I am heading towards anemia this week as well. I'm keeping my fingers crossed for all the tests.

FRIDAY, APRIL 9, 2010

4 shots down...44 to go.

Took my 4th peg-interferon shot yesterday. Put this one in my lower belly, like my first 2. The one I did in my thigh is pretty red looking...like a rash. It was a little itchy...gonna see if it fades a little. So far everything seems to be ok, as far as side effects go. Still tired, and getting more itchy. I have some itchy spots now on my back, and on my chest. And on my ankle. Will have to ask the doctor on the 13th, when I go for my next checkup. I may know if the treatment is working as well that day.

The initial bruise I have on my belly is finally starting to fade. I have noticed my eyesight is more blurry than it was before I started. Not sure what that is all about. I will ask the doc that as well. I think next week, I will start up on the boceprevir. Joy...more pills. But, I have been reading alot about boce and everyone that has taken it, seems to have cleared the virus. Something to look forward to!

Well thats it for me...laterz

THURSDAY, APRIL 15, 2010

April 13th visit update

Went in for my next check up get more blood drawn, and this time see my doctor. He went over my numbers...this is after 2 weeks on treatment, using the peg-interferon and riba. Starting viral load was 4,260,000. As of 2 weeks it's 680,000. Yay! I am hoping it doesn't start going back up. However, my red cell count has dropped, and so has my white cell count. That is normal, but still something to keep an eye on. I started on the boceprevir on the 13th as well. I have to take 4 horse pills, 3 times a day in addition to the riba pills. So far, no side effects from the boce that I can notice.

I started visiting a hep c forum, and that has been a great find. Lots of people like me who are going through treatment, and have gone through treatment. One woman was on my exact treatment, and said she was cleared after 6 weeks. We'll see if I get the same results.

Thats all I got for now...laterz.

MONDAY, APRIL 19, 2010

Wow...I'm anemic already...

Got a call from my research team. My blood draw on April 13th shows I am still trending down into anemia territory. They have now put me into one of the test ARMs for the study. I have reduced my riba dose by one pill...so now I take 2 in the morning and 2 at night, instead of 2 in the morning and 3 at night. This past weekend I was just exhausted...all day Friday, most of the day Saturday, and Sunday too. Tried to catch up on rest. I am hoping the riba reduction will bring my red cells back up and this will help with the general exhaustion I've been feeling now for the past week or so. I don't know how long it takes for the body to rebound. I have to go in tomorrow for another blood draw to see what is happening. I'll know more by the end of this week.

Laterz...

I'm a fighter from way back....... Helena

2010-04-24T15:58:00.000-07:00

I found out I had Hep C in September 2007. I was caring for my husband who was going through cancer treatment. Unfortunately he didn't make it and died in November of that same year. It was not a good year. With all the rest of the stress of children and babies and custody going on with my son.

I waited until 2009 to start tx. I was excited about it too. When I found out I had Hep C I told the doctor I had caught Hep B at work and he said I could have caught it at the same time. Although when I was a teen I experimented 4 times with needles so it may have been that. I didn't take treatment for Hep B because I didn't know I had it. I just felt really tired and had the diarrhea and figured it was the flu. I called in sick for a few days. Its hard to remember exactly how long I was sick. That was in the winter of 91-92. In the spring my doctor said I had a history of Hep B, so my body had done its work and killed that on its own. I was lucky. I really cant be sure of how I caught the Hep C, but it doesn't matter to me.

When I started the tx I was so positive of doing it I just brought the shots and pills home with me. That night I got the shot all ready and was holding it to my stomach and paused .. I just sat there holding it and I just couldn't put it in. I started whining and my son came to me and did it for me. He was my hero, and after that I just did it without any problem. I had never stuck myself before you see.

I didn't get sick or feel much of anything at first. Just slowly I got tireder and tireder, loss some hair, started itching and lost my appetite. I couldn't hike anymore because I had been hiking 3 to 4 miles up and down steep hills. I tried it but I lost my breath and my heart went crazy beating really fast. My hemoglobin levels were were falling as they do and were down to 9.4 and they pulled me off tx. I asked about the emergency drugs, all I got for an answer was "who said anything about that"? The nurse acted all scared and said we don't want to have to do a transfusion. Then she left the room and came back in and said they were pulling me off for 2 weeks. This all happened in week 18, so I finished 18 shots. I was clear though so I thought that was good.

I moved to Florida then and sought other places to go to. After I had called my old medical facility and asked what the doctor said and they wouldn't answer me. I was confused again, so I just figured since I had cleared, maybe I would be lucky and it would be enough. I decided to use a heptologist I had heard of in Florida and talked to him and he said whenever your ready. Since my friend had success with him, and is SVR now, I thought I better try this one. This Doc said it was stupid for them to pull me off and I liked that down to earth attitude of his.

I'm going back on the 26th of May. I don't know if I will start that day or not. My blood test results showed normal enzymes, but over 12 million viral load, where before it had never gone over 400 thousand.

Since my biopsy in 09 was grade 2 stage 2-3, the hepatologist said I had possibly progressed to 3-4. I don't know if that's possible in such a short time. I doubt it, but he did say possibly. So now my plan is to treat again and kill the dragon for good.

In summary, I feel that I waited too long, because I had so much on my plate when I found out. But there is nothing I could have done before my husband passed. Those 2 months were all I had left with him and I sure am glad I wasn't on tx. After that I should have started sooner, but the whole deal was really hard on me and I was half insane already from life as it were.

OK that's my story hope it didn't depress you.
Don't worry about me I'm a fighter from way back and I'm a tough ol chicken too.
Hugs, smile, and love!!!
Helena

carrying around a dragon for almost 30 years...Dan

2010-04-23T16:02:00.000-07:00

I served in the US Army in the early 1970’s when I was honorably discharged after 6 years with a disability rating of 30% and a sleeping killer that I was not aware of for another 14 years. Let me rephrase that; I knew something was wrong but no one could identify and name it until many years later.

In 1973 I was severely injured when a drunk driver ran a red light and T-boned the car I was driving on the driver’s side. I suffered a massive hemo-pneumo thorax, ruptured esophagus, ruptured spleen, ruptured diaphragm, lacerated liver, multiple fractures, a 3 centimeter tear to my right ventricle and a separated pelvis. I pumped blood into my lungs through the ventricle tear for 3 days. In that time frame and through my second open chest surgery I took 196 units of blood and exhausted the supply of three counties blood banks.

After I left the service I found myself frequently tired, often depressed, constantly aching, nauseated and slightly feverish. I had pains in my abdomen, pains in my joints, and pains in my legs. My quality of life was lower than I had ever known and no amount of tests, observations or treatments ever seemed to improve my quality of life or provide any answers. I had my perfectly good appendix removed to try and stop the stomach pains. I found out my appendix was still good by the lab results. I had been a corpsman and I knew how to read a lab report.

In 1984 out of frustration and with medical records showing I had been treated for non-A, non-B hepatitis I filed for service connection with the Veterans Administration. I was denied after several months of waiting. I was given no reason for the denial other than evidence was not provided to support my claim.

I continued to be sick off and on with an assortment of symptoms and no one was ever able to determine the cause of my ailments. I was told by several doctors that I needed to get over my trauma injuries and learn to live with myself. I was given medication after medication but nothing ever seemed to work to clear up my ailments. VA doctors kept trying to refer me to psychiatry. I was going in circles. Tests and evaluations, medication and referrals, more tests, more evaluations, more referrals, back for more tests.

Sick and tired of being sick and tired I quit going to doctors. My symptoms did not stop; I just stopped seeking any answers.

After being sick and vomiting with stomach pains I sought help one more time and found a VA doctor who ran a test on me for Hepatitis C. It was late 1990 or early 1991. I don’t recall exactly when. Now I finally had a name for the beast that was making my life miserable. My viral count was less than 1 million, my liver was not swollen and the biopsy showed no signs of cirrhosis. We talked about treatment options and they did not sound that good so I declined.

I followed up with that doctor until 1999 when I moved away from that hospital. I moved to the Midwest in 2001.

I sought out care at a VA hospital in Illinois. I was told at this VAMC that they had no treatment plans for drug addicts with Hepatitis C and if I wanted that kind of care I would have to go elsewhere. I was only at that hospital for an annual blood draw to check my liver enzymes as I had learned to do from the other VAMC where my good doctor was still practicing. I let this new doctor know that I was not a drug addict and in fact I had a security clearance and I took random drug screens whenever asked to support my job as a government contractor.

My enzymes were up and so was my viral load. I was told by the mid-west VAMC that treatment was expensive and I would need to be carefully screened before that option ‘might’ be offered to me. I chose not to be screened.

I sought out and found a new civilian doctor, outside of the VAMC. It was a good choice because I found a good doctor who took good care of me. We discussed treatment and all of my options. I went back to the VAMC and I was told again that I might not be offered treatment for Hep C and that even if I was offered the treatment I would have to do the whole 48 weeks and if I quit or had to stop that was it, my treatment options would be back to zero again with no chance to try again. I returned to my civilian doctor hastily.

I took the treatment for 48 weeks with no help from the VAMC whatsoever. As a geno 1A my chances of clearing the virus were about 50\50. With the help of other vets at HCvets.com I filed for service connection with new evidence and a new attitude. After 16 months I was granted 10% for hepatitis C.

It’s not very much of a price to pay for carrying around a dragon for almost 30 years. Not when all of the evidence (no use of universal precautions, a lot of exposure to other peoples blood, needle sticks and all of those transfusions, and let’s not forget the multi-unit jet injectors) was so easy to gather and present directly out of my medical files and personnel jacket.

My appeal for a minimum of 20% is still pending.

Never Give Up Hope!!!!! An Inspirational Story by Ronnie

2010-04-22T14:27:00.000-07:00

I just got back from an NA meeting. I got Hepatitis C from intravenous drug use (Heroin). I started using drugs when I was 12 yrs old. My introduction to Heroin was when I was 19 yrs of age. In 1997 I used a needle after my twin sister did (the first time I had done this). I knew she had Hep C. She was diagnosed with this curse of an illness in 1992. When the doctors first gave a name to this strain of Hepatitis. Before then, as you must know, it was referred to as NonA-NonB. Well, in my trusting nature I believed my sister had bleached the needle, however she didn't, and I foolishly trusted her. I don't blame her. I take full responsibility for my actions. Anyway, I saw a Hepatologist in 1999, and I had a biopsy done. Stage 1..genotype 1a. Though i had no symptoms of the disease he started me on Interferon and Ribavirin. 3 shots a week and 4 pills daily. I went through treatment while working and being a single mother. It was not easy,to say the least. My side effects were horrible. "Flu-like" symptoms,i think, is hardly an adequate term for what i went through. I was extremely sick,not from Hep C,but from tx. I was hospitalized 2 times with pneumonia and twice with kidney infections,dehydration came along with the 4 hospitalizations. This was over a course of 6 months. During my last stay in the hospital my viral load count went from 19mil to 13 mil. The doctor pulled me off the treatment. My immune system broke down completely. I did go on an anti-depressant before i started tx. The first side effect of tx. is not a medical one, but it is a psychological one.....Depression..suicidal thoughts. I went Thur both ,and i did attempt to kill myself once. Thank God it wasn't my time. So,now I'm pulled off treatment and i discover i have hypothyroidism, neuropathy,and osteoarthritis. I attribute these illness's to treatment,not Hep C. I wait one year..try to build up my immune system,and in 2001 i give tx. another try. This time i was able to take some time off of work..a few weeks here and there and again went through it as a single parent. My husband was in the last stage of brain cancer at the time. He was unable to parent. On the second round of tx...still the Interferon 3 shots daily,and the Riba, I lasted 5 months before I was pulled from tx for the same reasons as the first time. This time when the doctor pulled me I cried like a baby, as my viral count was 134, however he felt my life was being compromised. I did not goon an anti-depressant right away and felt like I was lost in a tunnel of depression and there was no light at the end of the tunnel. I could not get out of bed for days at a time, nor could I eat or sleep well. Similar experience with my 1st tx. Fatigue....YES!

I then went on the study for intergen..lasted one month. It was absolutely brutal on my body and mind.

Betty, I used to sugar coat treatment. I do not do that anymore. Our bodies naturally have a certain amount of Interferon in them. The amount that is in tx. is TOXIC....pure poison. It is up to each individual to decide whether tx. is the way to go for them. All react differently. My suggestion to those who have not gone through treatment before is to see a Hepatologist they trust, do some research on their own, and really be informed about treatment before undergoing it. I am now 54 yrs. old. I will never go through any treatment for Hep C again, except for a few supplements I do take.

I regret going through any treatment in the first place. In retrospect, I regret putting the needle in my arm. However I did and it is for me to live with. I do a lot of research on Hep C, and I belong to several Hepatitis C Awareness Groups through-out the Country. I advocate for a "cure" at this point, a vaccine, and I try to provide info, support, and friendship to all that I come in contact with. In the rooms of NA, many..so many people have Hep C. I believe their is a cure for HCV,I also believe that the Pharmaceutical Companies are making a mint off of those infected with the illness, and therefore have not disclosed this information. This is only my opinion after doing much research and speaking with many well-learned doctors who specialize in Hep C. The doctors are being paid very well also. I feel that I was used as a guinea pig as far as tx. goes.

I live my life to the fullest that I possibly can on a daily basis. I exercise, eat properly, rest when needed, and sleep as needed. I do not allow stress into my life....ever! I had let stress into my life and I realize that only made the Hep C progress faster. I do not let HCV define me, enslave me, or victimize me. I have been drug free since 1997 :).
As of last biopsy I am approaching Stage 3. I deal with this illness the best that I can. You know it's not my Liver that is giving me so many problems now. It is the neuropathy..more so the osteo. As I've said before to people I speak with...treatment, for me is the gift that keeps on giving.

So, this is my story up to this moment in my life. For those who read this I am not saying not to go through treatment, I am saying please be informed, and if you do not like the doctor that you are seeing, FIRE him/her. The doctor is working for you and getting very well paid for it. If you want a second opinion by all means get one.

Ok Betty...now I am tired lol..so I will say goodnight to you and to all that read this.

As I have posted many times through the yrs. that I have been at Seekers...ALL Stay strong, never give in, never give up, keep the faith, always have HOPE, do not drink alcohol, do not take any drug without first consulting your doctor; that includes any herbal supplement, and live your lives to the fullest that you can. Remember the Liver metabolizes all that we put into our body....

God Bless and Peace to all...Ronnie

Stay in the Fight.. Don’t Give Up on your Liver!! Summer's Story

2010-04-22T13:12:00.000-07:00

HCV and Cirrhosis have been the main focus of my life. In l980 my mother was diagnosed with cirrhosis of the liver. In the early 90”s they informed her that they had found a new strain of Hepatitis; it was called “C”. They gave her interferon for a time, but it made her so sick she didn’t want to take it anymore. I only wish that we would have understood what the outcome could bring by not treating this. In 2004, my mother died of liver cancer. I stayed with her for two years, watching her slowing deteriorate. She had two surgeries; trying to remove the cancer, but it was too late, it had spread. This was the most painful time in my life, seeing the mother I have, that was always so full of life and extremely active, die in this way. Needless to say I was so depressed, couldn’t get out of bed. Finally went to the doctor for my depression, and was informed that I had Hep C since 2002. They had over looked the test results. Talk about a BLOW! Losing my mother, then my other love, (my dog) and finding out I had Hep C, geno 1, all in the same month, sent me into the gloom of life. I told no one. Kept all my pain inside. The doctor told me that I needed to look into treatment, NOW! Of course, every doctor I went to irritated me because of, what seemed to be their lack of knowledge of the virus. One hospital said that they would treat me in a study, (of course, I wanted no part of being a lab rat). Anger was taking over my judgment, of what was real. I just wanted it to go away. Mentally knowing I had this and the thought of the same thing happening to me as did my mother, took me back to the doctor. This was 2007. I went to a Gastro doctor, he put me on SOC. He also told me that he had not treated many with HCV. Another, “OH BOY” moment. I went ahead and started the SOC, with a good attitude, that I would get through this and not let myself feel bad. Well….I gave it a good fight. After getting started, he checked me at 6wks; I had over a 2 log drop. So I continued. At the 24 wk point, checked again, and was back up to 2 million. He kept me on the meds for the full 48wks. At the end, he shook my hand and said,” sorry, maybe within the next 5 years they will have a new treatment”. I was a non responder. I found out through my brother the next week that his boss had gone into clinical trial study. He had just got the results of his 6 month post tx. He was SVR!!! I immediately emailed the study, (my luck had changed). I had gotten an email back just after I sent it. They wanted me to send all paperwork. They accepted me into the boceprevir study. I was at ND, by wk 12, and stayed that way through the 48 wks. The side effects were a little more intense this time around. I wasn’t sure if it was because only a month before I had just went though 48 wks of SOC, now back in the fight, or if it was because of the boceprevir. The fatigue, of course, was there pretty much all of the time. I also developed anemia. They had me on procrit shots, average, once a week. Finding out now, I was lucky in that respect too. I also had to take Neupogen, twice weekly for the last 3 months of the tx. All was do able though. I did loose about 60% of my hair. I’m now at 3 wks post tx and waiting for my results of my 4 wk post labs. I have a great feeling about this. I know that there is a chance that I could be disappointed, but so far I feel very positive. I would tell anyone that they should never give up, stay in the fight, the best way you can. Don’t give up on your liver. What this virus can do to it is nothing nice.

My thoughts and well wishes are for all that are fighting, or know someone fighting this battle.

Summer

Will Not Be Put Down For My Infection.......Harry

2010-04-21T07:59:00.000-07:00

I served in the Army 68-69 - wasn't diagnosed hep positive until 1992. In the mean time my wife was diagnosed. As it turned out, same critter I had. She caught it from me. Although it is rare to be transmitted sexually, she used to clean and dress my knicks and scraps. Usually bloody, hazard of the job at the time. As for me I only had two risks. The jet gun (MUNJI) and the transfusions I received after being wounded. The wife's only risk was me. Can't begin to describe the guilt that was felt or the pain it caused; knowing I was the source of her being infected. The only good thing after helping her thru treatment was she cleared. I didn't clear so I still carry the dragon with me. For many this would be cause for the stigma that surrounds hcv, but I look at it as an opportunity to educate others. I will not let a doctor or nurse touch me without letting them know nor any of my co-workers.

I look at it this way, it's my bug and I'm not sharing with anyone. I did nothing wrong as many others and will not be put down for my infection.
Thanks for your time,
Harry Hooks
Director, HCVets.com

I will edit this when I'm 85 or 90......Miles

2010-04-21T07:49:00.000-07:00

I met Hepatitis C in 1976 through a blood transfusion. The symptoms were there in the 80s but the doctors called it Chronic Fatigue Syndrome. I finally found what I really had in 1992 and went on Interferon but was a non-responder.

The doctors say that I cannot take anything with Interferon again because of the way it attacked my system.

So, I will wait for a better treatment to come along. I still have a high viral load but all other liver tests come back fine.

I went through the sides, going from denial, to depression, then to isolation, with no help from my doctor. I did not know anyone else who was going through it. I thought there had to be a better way... So, in Nov. of 1998 I started building our Seekers Hepatitis C support forum at Delphi.com.

I did not want others to go through what I went through without any support at all.

Our forum was active for almost 11 years and thousands were helped by so many great supporting people that were walking the same road and gave their time and knowledge to anyone who asked.
I planted a seed and watched it grow. I guess that was my real goal.

I keep our forum open in case any ole timers happen to drop in to say hello.

After 34 years living with hepatitis c without treatment I found that drinking extra water and getting about 10 hours sleep each night to let my liver have more time to do its work has helped me keep going.

I am now an old man with many fond memories of good friends that have passed through my life because of this disease, so this journey has had it's bright points. Thinking positive and enjoying each day as well as we can, helps to smooth out this bumpy road we travel.

I will edit this when I'm 85 or 90..........Until then, may good health come to all who read this.

Miles Lewis

(Seeker)

My Life is Falling Apart

2010-04-20T11:31:00.000-07:00

I was diagnosed with Hep C 5 long years ago. I had interferon treatments for 3 long years and it has been a hellish ride for me and my family. I had end stage 4 cirrhosis. After 3 years of getting shots 3 times a day, I finally was upgraded to stage 2 fibrosis and believed that I was getting better. A couple of weeks ago I found out I now have COPD. All of this is starting to take an emotional toll on me to no end. I think I got my Hep C in the Marine Corps in 1973. We were injected with air guns to receive our injections which I never saw them clean after each use.

I now have grandchildren, and my daughter is having a baby in July; my future is up in the air. Please help me if you can. I feel as though I am slipping through this mess alone. It is hard to relate this to my family as I feel my life is falling apart. I would like to thank you for websites like this; please help if you can.

Thank you. You can reach me through my profile email and thank you for your time and understanding

I am Blessed.......

2010-04-18T11:46:00.000-07:00

I am 47 years old. I was diagnosed in '94. Did monotherapy of intron A in '95. Cleared but relapsed. I was in clinical trials for the Rebatron in '96, which was when ribovarin was being tested. Again cleared the virus only to relapse. In March 2007 until May 2009, I treated with Pegasys and ribovarin...for a long 117 weeks. double dosing Pegasys and 1 1/2 times the weight based ribovarin and again relapsed. Due to chronic Hep C, I have endured many hardships.. Financial, emotional, and physical. As happens to many, it has brought me to my knees, to trust in God...to seek Him every day..By reading His Word, and prayer. I am grateful. This chronic illness has made me a more compassionate person, given me a deeper empathy for all those sick and suffering, no matter what disease one has, be it physical or mental. There are so many lessons to be learned in this life...and suffering for me seems to be the vehicle for enlightenment. This lonely path has helped me to become the person I was meant to be. One must know/understand darkness to appreciate The Light. What remains a mystery now, I believe will be made known when I reach heaven. I do believe that everything has a purpose. To have a virus that carries such stigma. To be somewhat of an outcast in this world has been very humbling, and one in which has drawn me ever so closer to my Creator, my Father in Heaven and my Lord and Savior, Jesus Christ. Today, I am basically, through natural remedies, trying to build up my immune system and stick to a liver friendly diet..And exercise by stretching and walking when able...which is more often than not. I thank God for what I do have...and one of the things to have come out of this, is the friendships with others who are also living with this illness. We are a family. I never could have imagined that I would have friends across the globe...who love, care and truly understand me. I am blessed.

Quote from ~Martin Luther King Jr.~

2010-04-17T17:49:00.000-07:00

Faith is taking the first step even when you don't see the whole staircase.

~Martin Luther King Jr.~

Rob's Story

2010-04-16T19:45:00.000-07:00

Here's one for ya Betty. I aquired HCV as a corpsman back in the Vietnam era. By a needle sticks. I received 10% disability for HCV after fighting the VA for 6 years. I just received 0% rating for cirrhosis. As they say having HCV that long I should have cirrhosis. Also saying that I only have mild pain. Well the VA at there own hospital in SLC UT shows I have varices lesions and uncontrolled GERD all associated with HCV.Verified by ct scan on two separate occasions. According to their procedures I should be rated at 100% disabled. But they didn't have any of the information that I just described. Because it all came to light after 2004. It appears they can't check computers from one part of the Government to another I guess. I sent the VA the information. As I always save copies just for situations like this. I sent it by fax and certified mail. Now we will see if they are true to their word and raise my percentage. They tell me it takes two weeks to get the information to the right people. So to be safe I sent copies to Senator Akaka of Hawaii as he is head of the veterans subcommittee. As well as my Sen Orrin Hatch of UT. So if I get denied someone should know.I don't know if the VA can get out of this but I will let you know. Good luck on your ventures I wish I were strong enough to help like they say I am. Rob

April 11, 2010 1:39 PM

Caring Ambassadors Hepatitis C Program - Randy Dietrich

2010-04-16T16:51:00.000-07:00

"My name is Randy Dietrich. I have a beautiful family, wonderful friends, a great job, and perfect health - or so I thought. In January 1999, a routine annual physical examination resulted in a shocking diagnosis - I had hepatitis C. After the initial reactions of panic, denial, and fear, I set out to learn as much as possible about the disease and the various treatment options. Much of the information, however, was either incomplete or contradictory, no doubt due to the fact that the virus causing the disease was only recently identified. It was then that I realized that others with hepatitis C were just like me -- confused, worried, and frustrated. When I couldn't get all of the information I wanted about hepatitis C from the health professionals with whom I spoke, I realized I would have to do my own information search. I also wanted to share what I learned with others living with the disease, and with the healthcare profession at large.

I went to my employer, Jim Possehl, president of Republic Financial Corporation, and together we brainstormed the challenge that lay ahead. In our search for answers, we jointly founded and funded the Caring Ambassadors Hepatitis C Program. I chose to research my options and find answers -- not only for myself, but for the millions of other people world-wide who are also living with the disease. I knew that in the short term I could do things to improve my health while on this search. My regiment to start healing my body has been organic foods, juicing, no alcohol, no coffee, no refined sugar, no red meat, and a positive outlook. I am working with a chiropractor, an acupuncturist, and other bodywork professionals, in addition to keeping up moderate exercise. Besides these common-sense measures for a healthy liver, what else should I be doing to allay the virus?

One of my strong beliefs is that knowledge empowers. Only when you have all the facts can you make an informed decision. I think that disease so they can take charge of their own health. We formed the program to make a real difference for people living with hepatitis C. as we go forward, the ways we can make these "real differences" will become more apparent to us. I believe that by helping others, I will help myself, and that, by helping myself, I will help others. We are all in this together, and together we will climb the mountain that cannot be climbed alone."

10 Truths I Believe to be Self-Evident

My journey with hepatitis C has been one of discovery and learning. There is much we do not yet know about hepatitis C. However, in reflecting on the major lessons I've learned in my journey with hepatitis C, I have come up with a list of "truths." Borrowing from the words of Thomas Jefferson in The Declaration of Independence, I hold these truths about living with hepatitis C to be self-evident.

1. It's the immune system!

The 1992 Clinton-Gore campaign made the saying, "It's the economy, stupid." part of modern American culture. Not to be insulting, but when it comes to chronic hepatitis C, it's the immune system, stupid. The immune system is the body's defense against viruses. We know the immune system is responsible for clearing the hepatitis C virus from the body. We also know that much of the liver damage that occurs with chronic hepatitis C is mediated by the immune system. Therefore, it follows that anything we can do to enhance the function of the immune system is potentially helpful. Conversely, anything that impairs the immune system is potentially harmful. Many of the other "truths" I include in this list ultimately relate back to the immune system.

I'd like to add a note of caution to the statement I just made about doing anything you can to improve your immune function. It is very easy to fall into the pattern of thinking that if a little of something is good, then a lot must be even better! However, this type of thinking can get you into trouble. As discussed earlier, excessive vitamins, nutritional supplements, herbs, and even exercise can potentially do more harm than good. If I had to give one word of advice to others with chronic hepatitis C, it would be "moderation."

2. You are what you eat.

This is a fact of life. With the help of the liver, our bodies transform what we eat and drink into the very substance of our bodies. While we may want to think what we eat doesn't matter, logic and basic biology tell us otherwise.

3. Stress management is important.

Scientists have known for many years that stress depresses immune function. As noted in number 1, anything that interferes with immune function is potentially detrimental to people with chronic hepatitis C. Recognizing and managing your stressors is an important way to influence your course with hepatitis C.

4. Protect your liver!

The liver is a vital organ. It processes nearly every substance that enters the body. The liver is the primary target of the hepatitis C virus. Anything you can do to decrease the demands on the liver while it is under siege from HCV is potentially helpful. You can protect your liver by eliminating alcohol from your diet, avoiding toxins such as smoke, pollutants, and chemicals, limiting your intake of complex chemicals such as medications and supplements, and eating a healthy diet.

5. Time is on your side.

For the vast majority of people, chronic hepatitis C is a very slowly progressive disease. With the exception of those people who are diagnosed with advanced cirrhosis, hepatitis C is not an immediate threat to your life. Moreover, for most people with HCV, it will never be a threat to life. In other words, most people infected with HCV will not die of the virus, but rather with the virus. Please know that I am not minimizing the challenges of living with hepatitis C. I am trying to point out that most people with hepatitis C have time to make choices about how to manage their disease and change their lifestyle, and that hepatitis C is not an automatic death sentence.

6. You are as you think.

As with all life experiences, your outlook, perceptions, and attitudes influence your experience with hepatitis C. No one wants to get hepatitis C. But once you have the virus, you are free to choose how you will react to having it. Many emotions can come into play when a person is first diagnosed including anger, fear, helplessness, shame, and others. But after the initial period of adjustment, it is up to you how you choose to live with your diagnosis. Persistent anger and feelings of helplessness may make living with HCV quite difficult. A positive outlook and hope can make daily life much easier and more enjoyable. Keep in mind that no feeling in and of itself is "bad" or "good." What gives your feelings their importance is how they affect your daily life, and how they contribute or detract from your sense of well-being.

7. Body and mind work hand-in-hand.

One of the most amazing features of human beings is the intricate and inseparable interactions between the body and the mind. Physical symptoms such as headaches, sleep disturbances, and changes in appetite that accompany depression and stress clearly demonstrate the fundamental relationship between the body and the mind. These interactions are ever-present in all people. Therefore, practices that help us achieve and maintain a healthy balance between the body and mind have the potential to improve both our physical and mental sense of wellness. A variety of practices can enhance the health of our mind-body relationship including exercise, healthy body weight, meditation, prayer, visualization, and many others.

8. Information can be healing.

Hepatitis C is a serious illness. The overwhelming reaction for most people when they are first diagnosed is fear. We all fear the unknown. Fear is very stressful, and we know stress is unhealthy for the immune system. In my experience, the best antidote to fear is information. The more I learned about hepatitis C and my options, the less fear I had. In this way, information can be healing. However, be aware that there are many unsubstantiated claims about so-called "cures" for hepatitis C. The unregulated nature of the Internet sometimes makes it difficult to separate fact from fiction. I urge you to be cautious, and do everything you can to make sure the information you gather is credible.

On a related note, I offer another word of well-intended advice based on my personal experiences. While information can help us overcome our fears and regain a sense of control, too much of a "good" thing can erode these benefits. In other words, get the information you need to feel comfortable, but be careful not to let your quest for information about hepatitis C take over your life. As with all things, moderation is usually the best and healthiest course of action.

9. Support helps.

All of us struggle at different times with our inborn need for independence and our social, interdependent nature. But in times of stress, one of our greatest sources of relief is recognizing our need for others, and taking advantage of the supportive resources available to us. An illness can be an isolating experience, but you are most certainly not alone. There are many sources of support available such as family, friends, individual counseling, and Internet-based and in-person support groups. It is a personal strength, not a weakness, to recognize what you need and to seek help. Keep in mind, too, the positive effects of support run both ways. By that I mean, you may find great satisfaction in both receiving support and later, by offering your support to others. Giving and receiving are two sides of the same valuable coin.

10. There is no magic bullet.

It was largely wishful thinking, but when I was first diagnosed with hepatitis C, I thought I would be able to find a "magic bullet" - a medicine or treatment that would quickly and painlessly clear my body of the virus without interrupting my life or requiring me to make any changes. But the truth of the matter is that at least for now, there is no magic bullet, no quick and easy fix for hepatitis C. Furthermore, no single medical discipline has "the answer" when it comes to hepatitis C. Like most of the chronic illnesses that currently affect millions of people worldwide, living with hepatitis C may require us to make some difficult choices and changes. But the good news is that when you accept your responsibilities with this condition, you are rewarded by regaining a sense of control and self-determination with respect to your circumstance.

Dana Dietrich (Randy's Daughter)

"The Day I Found Out My Dad Was Ill"

"It was the day before my birthday, and I was out having a snowball fight, girls versus boys (we were beating them good). My dad pulled up in his car and honked, right as I turned to see him, a huge snowball hit me right in the face. Ouch! When I got into the car, my dad was on his cell phone. I waved good-bye to my friends and we left.

For about ten minutes, we drove in total silence, then my dad turned to me and said, "I have something I need to tell you.

"Right off it was bad. He went on, "About a month ago, I took a new kind of blood test and found out that I have hepatitis C, it is a disease that harms the liver. And I believe that if I go on this special diet, I will get better" I was totally shocked, I mean, my dad, my perfect dad had hepatitis C. Then I thought of something else that he had said, "I will get better"! My dad is very strong and when he gets better, it will be the happiest day of my life."

Randy Dietrich is founder of the Caring Ambassadors Program Hepatitis C Program
CAP is proud to announce their 4th edition of Hepatitis C Choices

"God Bless the VETS" by Julian Lewis

2010-04-16T14:38:00.000-07:00

In 1966 being a boy of 17 I joined the army with my father co-signing for me. I took my physical and quite naturally the army said I was healthy to serve, Fort Bragg here I come. As every one else I went through the basic training "Shot Drill" routine and every one I saw was bleeding from their arm. We were told not to move or the gun could cause serious damage, so being nervous I kept looking ahead of me and saw guys arms bleeding, I never saw any cleaning of any gun while I waited my turn. During my basic training I was forced to dry shave in formation with someone’s razor, now 17 years old I hadn't and didn't shave, but I guess my drill Sergeants seen some peach fuzz.
After I finished my basic I was sent Fort Leonard Wood Missouri to do my advance training. I was training to be a water purification specialist. Once again we were doing our low crawl under barb wire fence which caused quite a few cuts with blood coming out.

After I finished my "AIT" I was sent back to Fort Bragg helicopter unit. They got orders to go to Vietnam and I was too young so they shipped me to another company at Fort Bragg. A while after I had orders to go to "Vietnam" but first I had to take more shots, Republic of Vietnam Training, and other combat readiness training.

I arrive in Vietnam and got processed in. I was assigned to the 520Th engineering Fire Department, did I mention I had no training in putting out fires. Being young with little sexual experience I went to our village in Tuy Hoa where I was stationed and seeing the girls there. Well I had no girlfriend or wife at home so I went to the village around 3 times a week. I was diagnosed and treated several times for "Gonorrhea" which is documented in my military records. I can tell you for a fact our hospitals were not all that clean or sanitary, but hey they did their job and kept soldiers alive.

The next 6 months I was sent to a place called "Moc Hoa" still in the fire department. There we lived in tents and so was our sick bay, not at all clean or sanitary but they did their job. Quite naturally I had to check out the village and your are right, caught "gonorrhea" a couple of more times. Don’t know if that ever got documented.

So now I am back in the USA at Yuma Proving grounds as a firefighter. I flew in a helicopter as a crash & rescue for a helicopter Lockeed testing for the army. Little did I know it was the Apache helicopter we were chasing to rescue any one if they crashed. So now my service obligation is coming up. I had to do what they call a "processing out”. All I got were papers to sign but the hospital was supposed to give me a physical. They claimed they did and I was in great health and released me in 1970 with an "Honorable Discharge". I had gone to the hospital several times complaining of severe abdominal pain, tiredness, itching all the time, sleepiness. But nothing ever happened.
I am now a civilian and move back to North Carolina. In 1970 I did what they call an "Agent Orange Physical" at the local VA hospital. Once again I complained of abdominal pain, tiredness serve itching and sleepiness and once again got a clean bill of heath except for a spot on my lung, but nothing never happened.

I now move to New Jersey (long story) and there I met my wife. We got married in November of 1980 and I was married to her for 10 years (another long story). The whole 10 years I was faithful to her but we got a divorce and I met my now wife in 1980 and we have been together all this time. During my first wife I went to doctors several times for being tired all the time, said I had too much "Hemoglobin”, he gave me some medicine and problem went away.

In 1983 move back to North Carolina to set up home for girlfriend in New Jersey and me. In 1985 I had severe abdominal pain and went to the emergency room. They discovered I had gall stones so the gall bladder had to be removed.

In December 2005 I was getting dizzy getting up and down. Went to my family doctor and he sent me for blood work and x-ray for he felt something in my belly he didn't like. He suspected "lymphoma cancer" so he sent me to an oncologist. In February of 2006 my oncologist sent me to a gastro doctor, their we found I have Hepatitis C and positive for Hepatitis B antigen. I applied to see a VA doctor and was sent there in about 2 to 3 months. Then I saw my VA doctor which is an Infectious disease specialist. He is great. After seeing my oncologist for over a year and seeing my VA doctor I decided to file a claim with the VA in 2006 based on air injection shots. While gathering my documentation and medical records I discovered that more cases were approved by the VA for "High risk sexual activities" with sexual disease transmitted so I went that route instead. It only took them a few months to deny me,” December of 2006".In January of 2007 I filed a "Notice of Disagreement" and requested a DRO hearing at my local VA.In January of 2009 I was approved for 20% for Hepatitis C&B with liver cirrhosis based on "High risk sexual activities”. Around March of 2009 I was informed by my VA doctor my last MRI showed I now have "Liver Cancer”. I filed for; "Hepatocellur Carcinoma" and August of 2009 was approved 100% for live cancer as secondary from Hepatitis C. In May of 2009 I had what they call an ablation done on my liver. I was then being evaluated for a liver transplant.

Here it is 2010 and I am doing blood work, MRI, heart stress test, physiologic test to see if I am fit to have a liver transplant. On April 6th 2010, I get a letter from the VA stating they are reviewing my claim and I should send them any evidence I may have to support my claim. Today 4/16/2010 I get a letter from the VA stating I have a C&P examine 4/20/2010 at my VA hospital. What do they expect to find, cirrhosis does not go away, liver cancer does not go away and without a transplant I am still in the same shape only worse then when they approved me 100% in the first place. Go figure.

Now I do not know what will happen 4/20/2010 but why put someone through all of that again. They are bringing back stuff I want to forget. The VA legal system is really messed up, but I can assure you the doctors I am seeing really care and in my book they are great.

Thanks for reading my story. I am not 100% sure if all the dates are correct and sorry for my misspelling. I hope you can get someone to listen for some of the VETS gave their life for what they call "America”. I was one of the fortunate ones to come back all in one piece. I used to say "God Bless America" now it has changed to "God Bless the VETS".

Quote from ~James Allen~

2010-04-15T20:48:00.001-07:00

You are today where your thoughts have brought you. You will be tomorrow where your thoughts take you.

~James Allen~

Just Finding Out

2010-04-15T18:17:00.000-07:00

I don’t know how much of a story mine will be because I just found out I have Hep C and still am in shock over it. If it will help here you go.

The 30th of March 2010 was the day after my 54th birthday. Little did I know that is would be the last birthday I would live in blissful ignorance of what I had contracted. My doctor called me up at 10:30am and told me over the phone that I tested positive for Hepatitis C. I almost passed out after he hung up. I have no medical insurance and had no way of going to see a hepatologist which is what he wanted me to do. There are 2 in the state of Arkansas and the one he contacted on my behalf rejected me because I was uninsured. DHS, the Department of Health, everywhere I called said there was no help for me. No one had the funding. I was devastated. I was having to go to work and trying to find out what I was supposed to do. How in the world did I even get this I was wondering. I don’t do drugs; I never had a blood transfusion. I was racking my brain and researching what I could find on the internet about this virus and the more I read the sicker inside I got. I remembered back in 1995 when I had donated blood to the Red Cross and they had sent me a letter saying they tested my blood 3 times and it came back positive but they told me it was either Hep A or B. Nothing was ever mentioned about C so I blew it off. Figured I felt fine so why should I worry. After all A and B won’t kill you. So here it is 2010 and I go to my doctor for him to test my blood after he put me on this medication that can be potentially harmful to the liver and my results came back. They redid tests and did a Hep Panel and it came back positive for C. THAT is how I found out.

I was scared and here I was with no one to talk to about this. No family, no one. So I started thinking again how in God’s name did I get this? Then I had this thought run through my head. I was in the US Navy from 1977 – 1979 and I distinctly remember them lining the recruits up and giving us shots in both arms at the same time with them air jet guns. That made sense to me that I would contract it in this manner. But I was thinking to myself that there was no way the Navy would be that careless or that stupid. So I got on the internet and typed in the search engine a question pertaining to the military and hepatitis and found the site that made my blood run cold and also gave me the answer I was looking for. I was infected with Hep C 33 years ago in boot camp. The next thing I did was to go to the local VA Assistance office and filed for medical help. I never told the guy what I suspected. I am not that stupid. I know how the military is. My father was in the Army for 20 years and would come home saying how things were handled in the service. So here I am. Waiting for whenever they will get around to approving me to even be seen at a clinic. I can’t begin to convey how much this has done to me so far. I am into the 2nd week of knowing what I have and what my chances are and sadly my own government that I served and got an honorable discharge did this to me. There is no way I could have gotten it other then those air guns. This is my story. I am having a very hard time dealing with all this. I haven’t even gotten the tests to show what my geno type or viral load is and I am nowhere near being able to afford getting it done or getting the all important liver biopsy. I may have a damaged liver for all I know. It is killing me inside. My life was forever changed with this news. I don’t know what is going to happen to me or how I am going to get the care I need. I can barely work anymore because my mind is so distracted and I come home at night and cry my heart out at this. I am afraid to touch anyone. I won’t even get near my nephews newborn son. I feel like I am damaged goods now. I don’t want anyone else getting this from me. So what is there for me to do other then pray God has mercy on me and somehow justice is served. For me and for everyone else out there who served their country and got this done to them. My heart and prayers are with you all.

2010-04-15T14:16:00.000-07:00

Management of Ascities - courtesy of EASL
European Association For the Study of the Liver

"Delay, Deny, hurry and die". Vietnam Vet Speaks Out

2010-04-15T13:44:00.000-07:00

Joined Army at 17 in 1965. Short and to the point, most Vets probably got Hep C from the filthy MUNJI jet injectors used for vaccinations. Herd Lines, gun paced against each tricep, vaccine and body fluids from troops before got injected by high pressure air through the skin. So we all received med and body fluids from the thousands of troops before us. No cleaning of the Jet Guns took place. 2 of 3 Viet Nam Era Vets have Hep C from this alone.

All blood to blood transfer after that only further spread the virus to other troops and other Armies. Now we die, most without compensation for our service connected disability. Throw away Vets. VA Motto "Delay, Deny, hurry and die".

only thing I know for sure is that I need to have a dog Stevie Hunter.

2010-04-15T08:38:00.000-07:00

About four years ago, in one of the newer subway cars, lit up so much you feel like you are in a fish bowl, I sat across from a poster with a man’s face, part of it looked, looked, well, like a burnt marshmallow. It said something like: If your face looked like your liver you would get treatment.

No how, where or when. Gee thanks. I would, if I could, if I should.

A lot of stuff in a short time led me from a relatively happy, healthy, self-sufficient & productive life to that point of life-less-ness, 31/2 yrs of stuff, not nice stuff.……I put my dog of 12 yrs to sleep, saw the second plane hit the world trade center & worked next to the city’s ME office, where, for years, the remains of 9/11 victims were dealt with.……I began to drink vodka, insane amounts of vodka.…….one, then the other person I worked for moved on, job got too hard, job got sabotaged, job got too easy, got no job.......pre- then full on menopause, which became disruptive then destructive. .…… short term, followed by working memory, began to fail…….poor long term memory since childhood…… I was thirsty all the time & my brain was being fried; sunlight hurt, florescent lights hurt……. …....my closest & dearest friend had been using me but I had no clue & out of the blue he publicly dumped me…..already a loner I isolated my self, had no social support, no friends……It is so very easy to loose yourself in a city so big…....I let myself get into the craziness of methamphetamine abuse. I experienced case of bursitis so bad I had to take cross-town busses for several months. Stuff like that.

November of 2004 I was diagnosed with HepC, w/ a high titer & some liver damage. I stopped drinking, cold, immediately started sleeping too much & crying. ridiculous, public displays of emotion.

Most likely I got the virus in my mid 20’s, but I hoped that I got it later in my 30’s when I worked on AIDS research projects with infected blood.

I figured I had time, that odds were against successful treatment & better drugs were on the way. Alone I started to “fix” my apartment, looked into other jobs, career changes & school. I tried to be self-employed. Initially found good dental care at schools but later had my gums mangled by a practicing hygienist. I was successfully evaluated for a clinical trial with a protease inhibitor, but for some mysterious reason was not included. I looked into other ways to get medical care but was only able to find mental heath care [later]. I had bounced back & forth between a zombie-like state & the high energy the neurotoxin caused from mid 2003 to mid 2007. Finally I just stopped. My life, my apartment & I were in embarrassing disrepair & remain so to this day. I was deep into depression, had no sense of time, no credibility & had accomplished nothing.

Less than a 1½ ago I got a dog quit smoking & cut way down on caffeine. I already ate right & walked allot. I got some mental health care & LATER found a support group. Age, drugs & alcohol use or lack there of, loss of estrogen, chronic infection, the ever popular stress & so on. Any, all, or a combination have taken their toll. It’s hard to know. I still remain unemployable on so many levels. I can’t afford insurance & I am afraid to gamble with what little savings I have on anything other than current living expenses.

I may have come a long way, I’m clean, sober & able to read & daydream again but in my mind I am still sitting on that train, soooo tired with my side hurting looking at the man with the burnt marshmallow face wondering if I should & how I’m supposed to get treatment & pay my rent at the same time. The only thing I know for sure is that I need to have a dog.

'Got Hep C in 1986 - Scott's Story

2010-04-15T08:29:00.000-07:00

'Got Hep C in 1986 shooting up...got pretty flu like sick for a month right after, then basically nothing ever since... cleaned up in 1990 and have a better life now....wife has Hep C, got it from me...treated once a year ago, was nonresponder, pulled after 27 weeks.... am waiting for teleprevir to re TX while I still have my 55 year old youth factor going on... worked thru TX and feel good over all, have become keen about Hep C awareness and issues through the http://www.especially/ out of bounds, a Delphi site.'

=

An Inspirational Story of The Heart - Margi's Story

2010-04-14T07:06:00.000-07:00

Well here it goes for what it’s worth......

I am a Mom of 5 children, mostly born at home, never cared much for doctors but went when necessary, for my kids and myself. Point is I didn’t have much need for intervention. Raised goats and organic food, exercised a lot and led a good life. I taught at a YMCA, was outdoors coaching and teaching in the summer, years went by, busy years....I was always the one folks came to for advice, for natural ideas to heal. I always thought if you had a good fire burning you could get through anything and fresh air and a good book could heal. But after my Dad died (of Liver Cancer) back in 1981 little things started to brew; I had these alien attacks in my stomach and the docs said well its gall stones... they looked, no stones....so I ate less fat, and put it out of my head, grew increasingly dependent on Rolaids. I started to not sleep when I was pregnant with my 4th child. Doc said eat more turkey, tryptaline ya know, and he patted my cheek. He didn’t know I REALLY was not sleeping, but hey I had my son and went back to work and mommying, more migraines, lost a friend to Hep C and add another boy three years later; add an Alzheimer’s Mom to the mix and well I was busy. Not sleeping and working full time. 3 older kids somewhere between high school and college. Busy times, still not sleeping... I know this is a long story but the point I am making is important, bear with me, because I went to the docs.... asked him to test me for everything, told him I had a short and not so sweet history with drugs when I was 15 (1969 maybe?), told him my Dad died of liver cancer, told him I wasn’t feeling well....wasn’t sleeping, my head hurt, my body was starting to hurt... this was in early 90's... So a long history of antidepressants followed and then therapy, I went, we all had rotten childhoods, so post traumatic syndrome and an abusive husband later, my marriage failed. I meant to tell you I went to therapy I wanted to FEEL better....Now my marriage wasn’t perfect, which one is? However, here is one of my points, if I knew I had Hep C and was sick and my husband knew would we have reacted differently? As it was, he took my therapy as a threat, further distanced himself and was angry. He didn’t know I was sick and felt alienation from my trying to get better. Well the therapist was kind of blaming my psychosomatic illness on him. I don’t feel well so what do I know? You can see where this is going. Like I say hindsight is 20/20 but still I am labeled a head case - no one still knows I am sick. I had a doctor make me read a book about all pain being caused by repressed rage...... (I wish I could have visited him with some riba rage.... I read the darn book.....) I divorce, I mess up all my kids, I move away into a few relationships just trying to find "home" ....and finally settle here. My boyfriend says you’re not supposed to be feeling so badly, I say the docs don’t help. They think I am nuts. He presses on... so I go back to the doctors and get, more new antidepressants; they make me feel worse so the docs up the dose, sorry it isn’t helping, so finally I stop all drugs.... I go back to the doctors, mind you this is 20 years after I complained of headaches and insomnia, I say I am not right, I feel lousy, it is your job to know what is wrong , not mine, I am not taking any more pills till you tell me what’s wrong. He pats me on the back and says okay ms lortie Ill do more tests but you might have to get back on your meds, okay I say you do some tests".... two days later he called and apologized..... And I cried. I had lost my dad, my friend Linda, and a few others, I knew. He said he was sorry. That was 3 or 4 years ago I think. So a few liver biopsies later and a failed treatment of 4 months of interferon and ribiviron later here I am, waiting and hoping for a cure. I can no longer run and walking is painful; the once strong health freak is humbled by a stupid virus. Sleep, well I get some powerful knockout drugs but I am one tough horse to put down. I read a great article in the New Yorker about how we all evolved from bacteria and viruses and how it shaped what survived and what didn’t over millions of years....so I am either what survives or what doesn’t in a big pic more powerful than me and I am humbled but still constantly reminded that each of us is important in this fight to bring knowledge and healing to our future generations. I have offered my body for trials, sorry you are not good enough to do them you would make our trials fail, ouch, my counts are off my history with interferon tainted by random alien infection and failure..... Sigh so here I sit in the middle of the night, a virus with a heart and mind, wanting to survive, to help my grandson learn to laugh and find the good in every day.

This is my story

Maggieblue

Tammy's Story

2010-04-14T06:30:00.000-07:00

My name is Tammy found out in 96 by donating blood. Didn’t do anything about it because I was 18 and young. But in 2008 started treatment. Went 48 weeks because I have geno 1 and in 2009 after treatment was clear. OOOH!!! 6 month checkup - back with a vengeance. Started again now instead of 48 weeks it’s 72. So far so good. But almost got fired from job. Because there is still a stigma out there. Thanks to the website and chat on Delphi we as a group can learn and talk to other heppers like me .Tammy Bohnstedt. Email dolphinprtty@aol.com

Brenda - Her Own Patient Advocate - Congrats!!!!!!!!

2010-04-13T08:38:00.000-07:00

My finding out I had HCV took place in the summer of 2008. I had labs done prior to hernia repair surgery and when hospital called to tell me, I received a referral to Gastro Dr. for "tummy problems". When I asked what sort of "tummy problems" the nurse said you have Hepatitis C. Want to talk about being floored? Okay. So went to see this Gastro Doc and right away did not much care for the bedside manner, yet being a charity care patient, I pretty much had to go with the flow. He wasn't going to do a biopsy until after TX, but got it done before TX and it showed I was fairly damaged...just this side of cirrhosis which meant that I had it for about 30+ years which would be about the time I had blood transfusions for major surgery. Then, had 3 rogam shots, one after each childbirth, and it to is blood product. However, how I got it doesn't matter, having it did. So anyway...for all the labs I had done in all the years in between, no one caught it...until now, and at age 58 was about to embark on the worst roller coaster ride of my life, even though at the time I thought it would be a snap.

I began TX Nov 14th 2008 with 180ml a week of Interferon Alpha 2a and daily doses of 1200mg Ribavirin. My body reacted immediately with viral load undetected by time I had PCR Quant done at 12 weeks. Also by the time I hit 12 weeks, was anemic, bumping into walls, consistent headache and indigestion, etc. I asked Gastro Doc for Procrit but wouldn't give it..cutting my dose down to 600mg a day instead...wellllll, I was not in the mood to play iffy games and knew enough about the virus to know the deletion of it lays in the TX, so unknown to Gastro Doc, I went down only 200mg and continued taking 800mg a day. ***Heads up people..don't follow my lead in stubbornness!!!! During this time I was not seeing Gastro Doc, he preferring to give orders through office staff via telephone. By the time the New Year hit I begged, pleaded and threatened to get the Procrit, and began to go to hospital oncology weekly for the shot. My RBC finally hit 10 and Gastro Doc decided no more Procrit. With next monthly lab I get a call to stop TX, and considering the shape I was in, I did. I called Gastro Doc's office and demanded to be seen which I was nearly a week later. Told Gastro Doc that I am stepping in as peer in my Health Care Team and this is what I want...a complete CBC to determine if I can go back on TX...a standing order for Procrit through out balance of TX on as needed basis. I hoped and hollered and was surprised when he went with it instead of against it. Had my CBC and began TX again missing only a couple of weeks. My numbers plummeted again and began weekly Procrit TX and barely hung on numbers wise. I was pulled off TX a couple weeks early, down to 600mg of Ribavirin a day, and Procrit no longer was working for me. It has taken as much work to get back to as normal as possible as it did to get through TX, but for me, I did the right thing. Five days ago I turned 60, and knowing how my body reacted badly to the meds, I would not be able to go through it again. Achieving SVR is my miracle. What really stands out to me though is not only the many that are battling Hep C, but those walking around without knowledge they are infected. The only way to truly overcome this horrible virus is to shout it out loud and clear. Encourage your friends and family to get tested and be vaccinated for Hep A and Hep B, and have them encourage their friends and families. Oh yeah...that Gastro Doc? Told me he wouldn't be the one to retreat me if I came out of remission lol. You HAVE to be your own best advocate and knowledge IS your weapon in the fight against Hepatitis.

Thanks for the quote uncledude

2010-04-12T19:18:00.000-07:00

Dost thou love life?
Then do not squander time,
for that is the stuff life is made of.

Benjamin Franklin

"thanks Ben, i wish ya told me 5 years ago, but i hear ya now"

uncledude

Kev's Story - Thank you for allowing me to blog it. You're one of my hero's

2010-04-12T19:02:00.000-07:00

For many years of my life I'd been telling myself and others that I didn't think I'd live past the age of forty. I don't really know why, just some sort of strange premonition I guess. But in July of 1994, in my fortieth year, my old life did indeed pass away and I embarked on a brand-new journey that through illness, has brought me to a whole new realization of what life is about and why we were put here in the first place.

My wife and I were living in Tennessee at the time, and I'd recently returned to work for a buddy of mine in Mount Juliet, just outside of Nashville. We'd moved to the area from Southern California in 1988 because of my music and songwriting which I'd worked most of my life pursuing professionally In order to pay the bills though, my day job kept me busy working in a local cabinet shop, a type of work I've always loved, but second only to my love of music.

I'd been noticing that the new cabinets we were building took a lot more energy out of me than I'd been used to, but figured I was just out of shape and needed to get used to the new work. Actually I thought I was adapting pretty well though for somebody forty years old and still felt strong in spite of increasing problems with unusual fatigue. I'd been feeling a lot of strange aches and pains for quite some time but since I was still able to keep up with the younger guys, playing music in the clubs and partying on the weekends, I figured it was just my age showing. No problem for me though, when I felt crappy, I'd just drink a beer or two, ease the discomfort, somewhat, then I'd be fine. . . . .or so I thought .

I'd been gaining a lot of weight at the time, oh I didn't really think it was that much . . . but I'd usually avoid the scales because that would have brought out that little nagging voice telling me what I really knew deep down inside: I needed to stop drinking. Being raised as a Christian, I'd chosen to rebel in a few areas of my life and go against what my heart knew was really right for me. Beer was always my drink of choice and because it was "only beer" and I could always rationalize away any interference it may have caused in my life. I know now that drinking definitely did keep me from living my life to the fullest and I'd known for a lot of years that it really wasn't right for me to continue to imbibe, but that didn't stop me. I think that it might have had something to do with being brought up to be a good little Christian kid whose Dad was a well-respected elder in the church. For whatever reason though, I grew up with a very strong desire to taste the very side of life that I'd been taught to avoid. Once I was old enough to see that I couldn't believe everything I heard or read, I began to question everything I'd learned and decided to find out about life for myself.

As the disease progressed quietly inside of my liver, I continued to gain weight and eventually noticed a strange sensation in my belly; something like an abdominal muscle that I couldn't tighten up, and this "something" felt like it would move a split second behind the rest of my body when I turned quickly. A tummy full of water is a familiar feeling but this was in the lower part of the abdomen and it scared me. Deep down I knew that something wasn't right, but I guess my tendency not to worry about stuff like that, along with my silent fear of bad news, kept me from wanting to see a doctor about it.

My stomach finally bloated so badly that I looked "ten months pregnant" (my wife's words) and was very miserable. I tried laxatives, thinking I might just need to clean out a bit, but to no avail. It was only after my wife Patty showed up on the jobsite unannounced one afternoon, and spotted me off to the side, clutching my abdomen in pain that she was able to convince me that I needed to see a doctor. I thank the Lord for that woman and especially for giving her the intuition to put her foot down and insist that I "bite the bullet" and see a doctor.
It wasn't long before I found myself diagnosed with chronic hepatitis C (CHC) which had progressed to end-stage liver disease (ESLD - ie. decompensated cirrhosis). The strange sensation and bloating that I'd been experiencing was caused from an increasing ascites problem in my lower abdomen (waste fluid buildup): a condition which is common with those that are close to needing a new liver. Too many years of working around solvents and my former affinity for certain alcoholic beverages had progressed the disease to the point where I was in really bad shape by the time we learned what was wrong.

To make a long story short, I found myself in the care of Vanderbilt University Medical Center where Dr. Hunter and the transplant team began evaluating me for what they then believed would be my need for liver transplantation before another year had passed. I was considered too progressed and not a good candidate for interferon treatment, and not a good risk for liver biopsy because of potential bleeding. This whole time period seemed almost surreal to me . . . almost like an extended dream. It was as if my doctor was talking about someone else and I was just leading this person through the motions. It's common for patients to go into a type of denial when faced with unpleasant truths about their health, and I guess my case of "comfortable denial" was necessary to help me get through this period of time.

There's something about being told, "there's nothing else the doctors can do" that makes a person realize pretty quickly that the doors have all slammed shut and the only opening is the window to heaven. I got down on my knees and decided that I was ready to put it all in the Lords hands for real this time. My daily beer drinking had been a part of my life for so long that I'd come to the point of not really knowing for sure how much was habit and how much might be a physical need. Either way I knew I'd need help changing my lifestyle, and the only thing I knew to do was to ask for the Lord's intervention. Looking back now, I know that one of the main reasons that I'd been drinking so much more in the last days was because I was medicating myself from symptoms I was trying to ignore. I definitely started to drink like an alcoholic but by the sheer grace of God, my body never became chemically addicted to the poison and I never had any problem stopping it immediately once I was diagnosed.
The Lord completely took away my desire for alcohol when I got serious that afternoon in 1994. Although I know this sounds far too good to be true, God did indeed work a miracle that day which saved my life. Like never before, I'd poured my heart out in prayer about my concern for remaining abstinent from drinking. I prayed for guidance and asked the Lord to show us the path to my healing. I asked for forgiveness of my past and found that for the first time in my life I could truthfully say I was willing to completely let go of everything I'd known and wanted for myself, and I asked God to guide me down whatever path he would choose for me. Now there were no thunder bolts or lightening and no audible voices from heaven, but after that prayer I felt a peace and presence of spirit that stayed with me for the duration of this most scary time.

Back then there wasn't a lot of information available on hepatitis C, especially in Tennessee, and after scouring the local libraries and bookstores. my wife Patty and I traveled to California to visit my folks and to some of the facilities there, hoping to find some better answers about this invader that threatened my life. Because so little about the disease was known at the time, we basically searched for natural things that could help me to regenerate my liver and protect it from further attack. It can be a daunting task to separate fact from fiction with the multitude of bad information that exists, but we made it a policy to double and triple check all of our information to confirm truths about the safety of different herbs for the liver and my particular condition.

It wasn't long before my folks put me in touch with Dr. Tom Smith from the International Clinic of Biological Regeneration: an organization that specializes in cellular therapy which I had hoped might be able to help me speed up liver healing and avoid that liver transplant. Although we eventually decided that this kind of treatment would probably not be the answer for my particular situation, the good doctor gave me the beginnings of the regimen that I still use today. Thanks to his tips, and the right combinations of healing herbs found over time, we did start to see a light at the end of the tunnel. Patty and I spend hours and hours learning from such tremendously helpful books as those written by Dr. Julian Whitaker and Dr. Michael T. Murray. Because of this and the continuous prayer from those that care about me, I am pleased to say that I am no longer considered in need of liver transplantation, and am "holding my own. The virus still remains in my body and I must maintain strict dedication to my daily regimen in order to keep the disease under control, but I'm thrilled to be alive with my own liver still intact and able to share my story with anyone who has an interest.
"Many traditional doctors still mistakenly tell patients that herbal medicine doesn't work and cannot help control hepatitis C. If this was really true then my own continued existence would have to be a figment of a whole host of collective imagination!"
Kev Krueger
November, 2002
" Still controlling hep C WITHOUT interferon!"

February, 2004
It's been a long hard road since my diagnosis in 1994, but without a strong faith in God, I doubt seriously that I'd be here to write this. Being the male breadwinner of the family, it wasn't easy getting used to the change of roles and having to rely on someone else to do things for me. The feelings of worthlessness at times, could be overwhelming. The small wood shop that I'd been working for hadn't been able to offer health insurance and since Patty was between jobs at the time, we suddenly had no income, no health insurance, and faced the prospect of my needing a lifesaving procedure that not even selling our home could pay for. My doctor painted a pretty scary picture for Patty when describing what could possibly happen to me, and being the wonderful wife that she is, Patty rarely left my side for the first year after my diagnosis. This meant we had no income coming in and we knew we faced losing our home and much of what we owned. Patty was prepared for that though, and with the grace that only this very special lady could demonstrate, she proceeded to make arrangements to put our home on the market and began selling off possessions at yard sales.

This whole period of time seemed like a continuous need to reach out to God for help, and although it was always a struggle, the Lord never failed us. We didn't have much choice but to file for Medicaid and Social Security Disability coverage, and we soon found out that because this disease was new to the system, it would be an uphill battle all the way. Hepatitis C was not on the books for anything at this point, and it took sheer persistence on the part of my wife and a lot of teaching about the disease itself along the way before we were able to get my case approved. Patty was always the pillar through all of this and I thank the Lord constantly for blessing my life with hers. Only once did she ever let me see her break down and that was the first week of my diagnosis. I know that she must have needed to cry out a lot, especially during those early days, but she knew that I needed her strength and her fortitude wouldn't allow it to happen, at least not that I knew about. Sometimes I think it was harder on her in those days than it was on me because I had her to pick me up when I needed it, but I wasn't strong enough to do the same for her. Patty had nobody to talk to that understood the disease, and no shoulder to cry on in times of desperation, but that never stopped her from pressing forward and learning anything that she could that might help me to get better.

I'd been restricted to a diet of 2000 mg of sodium per day and Patty had to practically learn how to cook all over again because most of what I ate had to be made from scratch. Even through all of the uncertainty and stress that was suddenly thrust on our lives, my darling wife hung in there like a trooper. She jumped in with both feet and successfully fought for my Social Security disability, never ever showing outwardly that she was still in danger of losing her husband. Patty is my rock, and as long as I have her, I could lose everything and still have it all. It was difficult letting go and one of the hardest things I had to learn was not to worry about finances. I used to get so worked up about it in the beginning that I'd be physically sick when a bill would arrive that we couldn't immediately pay. I guess this just goes to show that faith is a process of continual growth and no matter how much we think we have, we've still got a long way to go. God is faithful though and we did survive. Patty was able to pick up part time work here and there as I began to improve, and the loving parents that God blessed me with have been able to help us along the way while we work our way out of the pit that we found ourselves in.

With every day that passes, our lives grow just a little closer to some semblance of normalcy, at least as close as can be expected when one partner is disabled and the other devotes her very being to helping him stay alive and comfortable. In 1997 Patty and I learned of the first patient's conference for hepatitis C in Washington, D.C. featuring the highlights of the NIH Consensus Conference held earlier that year. We decided that the chance to hear the latest information about the disease from some of the top doctors in the nation was too good to pass up. During the weekend, for the first time since my diagnosis we were able to sit down with a roomful of other patients and hear that many were going through a lot of the same things as I was. I guess I should explain that up until this time there was very little information available anywhere about hepatitis C that the average person had access to, and many of our symptoms went unrecognized by our doctors as related to liver disease. I think that most of us at the event that weekend were to the point of believing that many of our discomforts were either in our heads or caused by other mysterious maladies that we'd just as soon not know about. Hearing that we weren't alone with these "unrecognized miseries" was something that I believe made a profound difference in all of our lives. Words can't describe the mixed feelings of relief, joy, love and compassion in that room that day, and there was a type of unity that I'd never before experienced with any group of people. Patty and I returned home energized with a new hope and armed with the latest information about the disease, eager to share it with the world!

Actually it was a bit of a disappointment to learn that none of the news outlets in our area was the least bit interested in hearing what we had to share, but hepatitis C was still too new I guess, or maybe what we thought was such compelling news wasn't so compelling to those who aren't affected by the disease. We didn't let that stop us though because what we'd experienced in Washington was too good to keep to ourselves and we vowed that we'd strive to see that no other hep C patient ever had to feel alone.

We proceeded to start a badly needed local support group in the Nashville area, and got online to spread the word! Today that group has grown into a nationwide 501(3)(c) support organization with partners around the world who share in our mission to help educate and support those infected with hepatitis C. Even though none of us receives financial compensation for our volunteer work, it's still exciting to watch the NHCC grow and rewarding to know that we're reaching people all over the world whose lives have been affected by hepatitis C.

The National Hepatitis C Coalition held three national rallies in Washington, D.C. from 1998 to 2000 to promote awareness of the disease and inform our legislators of the dire need for increased funding related to it. Putting together events like these, participating in local awareness opportunities, assisting with the Coalition affairs when I'm able, and just helping patients with hep C in any way we can has become every day life for us these days. I find that I get so much strength from just sharing what we've learned with others, that I often feel like I need it almost as much as the herbs and supplements that make up my daily regimen.

I should mention here that in spite of everything the Lord has led Patty and me to accomplish related to my health, the virus still remains in my body and I am not cured of hepatitis C. However, slowly but surely we continue to see signs of improvement thanks to lots of prayer and my own daily regimen of herbs and supplements. I no longer think of this disease as being a threat to my survival because I now know that in spite of what some folks would have us believe, hepatitis C can be controlled through alternative methods and without the use of any form of toxic chemotherapy medications like interferon. Although your doctor probably won't rush to tell you about success stories like mine, more and more patients are choosing to forgo the chemical treatments in favor of safer alternative therapies that rarely even cause side effects in most people. When used correctly, herbs and supplements really can help us to control hepatitis C, as verified by the multitudes of patients all over the world who continue to benefit from them as I do. It just requires an unwavering dedication, determination, and the belief that God created a better way to control hep C. Hey, I'm no different than anyone else and I'm certainly not "special", so if I can do this, why can't you or your loved one?

In closing I must say that although it's just been since 1994 that our lives changed so radically, in many ways this journey feels like a completely different lifetime. Through it all, and in spite of the many hardships my family has had to endure because of my having hepatitis C, Patty and I have learned that our real purpose here on earth is to help others. We thank the Lord for this opportunity and will continue to do His work here on earth as long as He will allow it.

Entering the Dragon's Den by Trudy

2010-04-12T18:51:00.000-07:00

I was diagnosed in June 2007 when attempting to donate blood. Formal Dr. diagnosis in July 2008. Type 2 stage 2 (liver) as of Oct 2009. Can't start treatment yet. Most likely contracted virus in 1954.
For the past 10 years before diagnosis, I would have random unexplained but debilitating periods of time with extreme pain and fatigue... MANY tests & Docs and no diagnosis..(Fibromyalgia, I'm sure now- related to HCV.)

In hindsight, I started experiencing mood changes and gradual fatigue (blamed each on a stressful job) about a year before diagnosis. Also in last 6 months, the symptoms became very noticeable. My friends and I were concerned about mental changes... Was it some precursor to early Alzheimer’s?? (Brain fog). My friends and I spoke of how I seemed to just keep "catching this same bug" over & over...had difficulty eating...painful stomach, occasional nausea (for about 18 months before) then the extreme, unending fatigue set in...I was really hard on myself. Thought I was “getting lazy/ unmotivated".

Even with all of this & a nagging subconscious knowledge that something wasn't right, when the blood bank nurse told me the test results, I totally denied that I wasn't 100% healthy... That it couldn't be right because I wasn't sick!

Just my naive entrance into the Dragon's Den...

I have not been able to start treatment; although three Hepatologists have said I need it NOW. I have the extreme pain again, worst ever. All over, widespread, undiagnosised still. Hepatologists won't start treatment till this is better... Just send me out into the world to find & fix it first!! So I am now in search for a doc who will consider the diagnosis of Fibromyalgia...hope to start treatment mid-summer. Don't want to do treatment; just want it over...hopefully back to life outside the Dragon's Den and with Fibromyalgia under control. Can always hope....

2010-04-11T17:54:00.000-07:00

Tech May Have Exposed Thousands to Hep C

CBS News

Beth's Courage and Inspiration

2010-04-11T08:06:00.000-07:00

Hi Betty, my name is Dove/Beth and I'd like to add to your efforts regarding Hep C Awareness. Thanks for doing what you are doing! :) I understand that you're looking for people's experiences with the treatment etc. I would like to participate with what help that I may give.

So here goes: To begin with -

I was diagnosed when I went to see a doctor for back pain and fatigue. I hadn't been to a doc in over twenty years except to give birth to my 2 kids, They are 26 and 17 now and no hep c thank the good lord. I did get yearly pap tests and mamo's because my mother had died at 41 with breast cancer, or perhaps I would have found out sooner. I had no symptoms as far as liver problems went or so I thought. I thought I was just getting older. I would go to work, come home make dinner and just fall into bed with the heating pad. I had no idea until when I finally at age 47 got insurance an had an actual complete physical that the "dragon" was working against me. Liver enzymes were elevated, More tests were ordered and all I wanted was for the constant tiredness and back pain would go away. The diagnosis just blew me away. At least I found out a reason. In truth it has actually saved my life to have found out about hep c because if I had not gone to the doc and kept drinking the way I was I would be probly way worse. Drinking is like pouring gas on a flame, little did I know that the virus thrived on my beer. My liver biopsy came back grade three and stage three which meant that I would be in cirrhosis soon.

I treated Geno 3a for six months and am most fortunate that I did as I am SVR today. I think it should be a routine test for everyone. A simple blood test. I've been thinking about the many risk factors. It is so important to be tested. Get check ups every year if possible. Not just for Hep C but routine stuff cuz it can save your life. I know many people don't like going to the doctor. Me included (They always find something wrong,lol) But to wait is way worse. The alternative is way way worse. We want to be here for our families. I love Janice and Friends. They are the best of best. Treatment is tough, but you are tougher. No one asks for this and no one deserves this. Today I am SVR after six months of tough duty but it has made me a stronger and more appreciative of all the small pleasures in life and a better person. Treatment definitely took me down a few nothches in the strength dept. I wouldn’t change a thing though. Today I live a healthy life. My back pain is slight ( I'm getting older) and I have much more energy. Its a new lease on life to be able to exercise. I never exercised till this ordeal happened. Now I am a firm believer in living right. So for me it was not just an excursion into the bizarre zone with the treatment (which it was) but a true life enlightening experience. I didn’t say that during treatment because it was day by day, but not until afterward. My advice to those in treatment: Keep on keeping on because you can do it! It is only temporary!!! It sure doesn’t feel temporary while you're doing it but it is. Yes it its tough duty and there may be days that you just don't want or can't.... but those are the days that you must be kind to yourself and allow yourself to just be. The rest will follow. You will feel better. Try not to put to much pressure on yourself. And always know you have friends at Janice and Friends (OUR LIFELINE!) Thanks for listening.

2010-04-10T18:44:00.000-07:00

Diet and Hepatitis C Written by Jocelyn Rodriguez for
NATAP National AIDS Treatment Advocacy Project

2010-04-10T18:41:00.000-07:00

I Have Cirrhosis. Should I Eat A Special Diet? Written by Charles Daniel, former About.com Guide
Updated: July 14, 2009

2010-04-10T18:23:00.000-07:00

Combo Survival Guide all information compiled by Trishamn, Lacey & Freyja

This information got me through all aspects of Side Effects from Hep C treatment

Shore to Shore for a Cure...

2010-04-10T17:31:00.000-07:00

I'm fourty two years old and have HCV. I found out about four years ago……………
When I first found out I was HCV positive, I was devastated. I was sure that my life was going to end the next day and it terrified me not knowing what was happening. My original diagnosis came from a nurse practitioner and to say the least, she had no bed side manner. She proceeded to tell me I had Hepatitis B and that I could no longer be seen at that office. (This by the way was a misdiagnoses). So off I went, tail tucked between my legs, to see the specialist. If a health care provider could treat you like this how on earth was the rest of society going to treat you? Was a thought that I couldn't get out of my head. Thank god I did find a specialist who assured me I didn't have to worry about pushing daisies yet and the illness in fact was not a casually spread one.

Hepatitis can be a very manageable disease and yes there is treatment for it. My Dr assured me that you can live a very healthy life if you take care of yourself. There are support groups on the net that can lead you to resources and organizations that can help with medication and most off all education and awareness.
I have been searching and searching for information about this illness. The more I read the less I know. I dont understand why this disease isnt being taken as seriously as some of the other diseases. Maybe we just are not being loud enough to be heard. So for others like me who want everyone to here our voice, I am attempting to hike from NJ to CA. My progress will be very slow. But I will do anything I can to help spread the word. I cannot set up fund raisers and such but if anyone is out there who would like to use my effort to promote their drives, I will be posting on Facebook my daily progress. I'm going to survive this hike as natural as possible, and I don't mind catching rain, but a fresh bottle of water along the way and some high fives with other HCV sufferers would mean the world to be. Please follow me on my journey. http://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455

I can sit home and feel sorry for my self because I have this illness or I can go out there a spread awareness . At this time do not qualify for assistance with the medication. So I have nothing but time on my hands. To much time to just sit here, and hopefully enough to receive treatment.

So this begins my journey. Shore to Shore for a cure...

I'm with you,
Betty Vega - keep us all posted

Just an update..So far I have a 190 plus fans on the HepC awareness page. You can view it here..http://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455 I need all the help I can get..It is not a donation page..I do need your help voting for me on the prilosec sponsorship page. Im only asking for a little support and a place to rest my head along the way.

If any one can help coordinated things with other walks or fund raiser along the way please let me know. I WOULD LIKE TO MAP THE TRIP WITH THESE THINGS IN MIND.

Thanks again a reply now and would make my day..hint hint

Im' leaving on the 13th for my hike across The U.S. to tell as many as I can to get tested. Some of you know what I'm talking about and some of you might not. I would put the link to my page up but I have been blocked from another forum and think that might be why..But any way I hope to see some of you along the way..I am going to be in DC for the rally on the 19th. Then I'm heading south. I will be traveling down the east coast across the south and up to Cali..See you around

Theresa

You Go Girl...Betty

Albina's Hep C Story

2010-04-10T15:47:00.000-07:00

My name is Albina,I am 34 years, I have never done drugs, never had a blood transfusion, never shared needles. Just a difficult labour 8 years ago, with forceps, some dental procedures during these years, but no blood transfusion.

I was diagnosed on September 2009. Just by coincidence, routine test, although I had a long time feeling tired and almost the first to catch the flu. Almost every month just like menstruating.

When I heard about the virus I remained completely indifferent, I didn't know anything about it.

Now I know a lot of things.I am genotype 1; low viral load, 256.000, fibrosis test 0.20.

I thank god, and I hope to continue doing well.

Yes I am tired, Yes I still catch the flu, but at least my lab tests are good.

I have not done the biopsy, and I do not know when I will have one. I had an US and CT Scan because of a hemangioma on my liver to check for tumor. I am having another US on May, since doctor wants to keep me under surveillance. But I am happy! I have two kids, who are negative. My husband who is negative. They love me.

I have a family that loves me, parents, brother ,sister, and I feel happy.

The virus is not gonna beat me! I have promised in silence to my family and to myself!

40 Years Living with a Time Bomb

2010-04-09T19:10:00.000-07:00

I was just diagnosed with HCV stage 3. At this time, that's all I know. I have known that the disease was with me for 40 years. It’s been like living with a little time bomb in my body, not knowing when it was going to go off. Well this week, it went off. I finally went back to my liver doctor and all it took was one blood test for him to put me on the fast track. The biopsy was next, and I got the call 3 days ago. Stage 3 and that's all I know. This is something I wrote, describing the time line of how I got here:
ok, here is the 2 minute elevator ride explanation for me:

When I was 17 I did what 17 year old kids did ..It was 1969...fill in the blanks... i went to Woodstock too.
Shortly after, I woke up one day and I turned a lovely shade of yellow jaundice. Hep non a/b in 1990 I wanted some life insurance, so they did a blood test; elevated enzymes. The doctor said they were slightly elevated, no biopsy needed. I didn't get the life insurance.
5 years ago I had a physical and blood test came back with really elevated enzymes...the DR said we need to do more blood work. Nope, don't want to do it, so I didn't. (Denial)

Last year I got the shingles (ow) more blood work, and the doctor said you really need to see a liver dude.

In March I finally saw the same DR that I saw in 1992...blood tests, biopsy, and phone call....treatment immediately. Not good...ground floor, 40 years later, and now I have to get off.

I am new at this, and I don't know what is going to happen and I am really worried. I’m thinking that if I did something sooner that maybe I wouldn't be in this mess today; but you can't turn back the clock. What has helped me for the last 3 days is the support and help I get from people I don't even know. Taking the time to answer my many dumb questions. They are a life line in a sea of doom. I’m really worried, mostly because I don't know what's happening. Thank you for being one of those people that helps someone like me.

Thanks so much for who you are Uncle Dudeness.............

Uncle Dudeness - Biopsy Results

I just got the biopsy results from my DR today, and he said it was worse than he thought. Although he is a liver specialist, he is sending me to another liver specialist at Yale. today, I found myself just staring down with no thought in my head. Blank. I feel lost, I don't know what to expect. I posted the results at Janis. I hope Step will look at it soon, cuz i am clueless.

Anna's Story

2010-04-09T15:46:00.000-07:00

My name is Anna. I live in western Sydney. I am 62 years old. I work in a legal firm.

I started injecting drugs in about 1969. At first it was amphetamines, then anything I could crush up and inject. I've injected mescaline and LSD, tranquilisers and speed. In my stupidity, I thought that if you couldn't shoot up a drug it wasn't worth doing. I was living in Canada at the time.

When I came back to Australia, it wasn't very long before I found my drug of choice - heroin. I first went onto a Methadone program in 1975, but Methadone was always considered a backup for withdrawal symptoms for times of unavailability (for whatever reason) of heroin.

I spent the next 19 years as a junkie. I had a co-dependent man who was extremely violent, and he made me do the most horrendous things to obtain junk. Finally, in 1994, I had had enough. I did not want to be a middle aged heroin addict. I decided to leave my man and go to Sydney. This turned out to be very fortuitous. I believe that to quit any addiction, you need to get away, make new friends, find a new drug-free lover and run from your junkie environment.

I moved from Melbourne to Sydney in 1994. I was quite ill for a couple of months but still found a job and attempted to shake off my junkie mentality. I had a little help with Codral Forte, and I drank quite a bit of alcohol.

In 1994 I was diagnosed with psoriasis. I went to a doctor who suggested I take Methotrexate to control my psoriasis. Methotrexate can have a detrimental affect on the liver and its use needs to be supervised. I had a blood test which showed I had hep C. I wasn't concerned at that stage. I didn't take the diagnosis seriously. I continued to live my life "to the fullest". In time, the junkie mentality faded. I was still drinking nearly every day.

I continued to take Methotrexate unsupervised for a long time. In 2003 I found a GP I liked and discovered that I had hypertension which required blood pressure medication. I had regular blood tests. My liver functions were rising. I looked into hep C treatment. In 2006 I went to a gastroenterologist and received advice about treatment. I didn't like the sound of it. I was afraid of the liver biopsy.

In 2007 I stopped drinking completely and discontinued taking Methotrexate. My liver functions were still rising and my GP said I should seriously consider Interferon treatment. I went to a Sydney Hospital where I had an ultrasound, a CT scan and a biopsy. My fear of having a biopsy was completely unfounded as the procedure was painless.

With a positive attitude, I started the interferon/ribavirin treatment in January 2008. I had heard and read some pretty negative things about it, but was adamant that the drugs would not affect me and that I would be able to fly through the 48 weeks of treatment.

Unfortunately, that was not to be the case. Within six weeks after starting treatment I was anemic. As a consequence, I was prescribed "Epo" to boost my red blood cells which I had to inject twice per week. The “Epo” did give me a little more energy.

Prior to the treatment I was a strong advocate for exercise. I walked five days a week for an hour during my lunch period. Sometimes, when I was feeling weak, I had to force myself to exercise. Then the horror of the treatment really began. One Friday evening, seven weeks or so into the treatment after walking during lunch that day, I started to develop cramps in my feet and lower legs. They were excruciating, and I was hopping around the bathroom screaming with pain. The cramps that night lasted about five minutes. I did try and walk again but the same thing happened. I discontinued exercise of any description.

The cramps got worse and worse. I'd be at my keyboard at work and my hands would cramp. Also several times at work, I would drop to my knees crying in agony. I informed the hospital and was told this was an unusual side effect. I was instructed to drink plenty of water and also to drink Gatorade and tonic water. None of these helped, and I suffered a great deal. Every day I would get cramps in my feet, lower legs, the inside of my thighs and hands with no relief in sight. Eventually, the hospital gave me a prescription for 300mg quinine sulphate. I took one tablet daily. They did ease the cramps but made my hands shake and my heart flutter. One night, even though I was taking the quinine, I had cramps in my legs for nine hours straight. It was a terrible night and the memory of it will stay with me forever.

I also had severe pain in my left shoulder and upper back. My GP sent me to a physiotherapist but it didn't help. I was convinced it was tendonitis from my years of typing. I purchased several creams and lotions for this condition but they offered only temporary relief. Once again, the hospital had no answer for this. Another unusual side effect I was told, but wait, there's more . . .

The right side of my face started to swell,, also my right ankle. The swelling in my ankle made it difficult to do anything. Sometimes in the evening, after a day of walking around, my whole body would ache. It was particularly bad in the mornings. I could feel my eyes were swollen when I woke up. The hospital had no answers for me regarding the swelling. My GP told me to take time off work and elevate my leg, which I did, to no effect. Eventually, my GP told me that one of my blood pressure medications, Felodur, could be causing the swelling. I stopped taking them and the swelling went down. The hospital said that Interferon had nothing to do with this problem though I had been taking Felodur for years and had never had an adverse reaction before.

I was prescribed Panadeine Forte for pain. Unfortunately, codeine makes me itch. I couldn't take the tablets as I'd scratch my psoriasis and make it worse. The treatment also had a severely detrimental effect on my psoriasis though not at first, but as I got into the treatment, I got psoriasis in places where I had never had it before. I knew that Interferon would affect psoriasis. It broke out all over my back and I would be unbelievably itchy 24 hours a day. I tried everything to ease the itching. The hospital gave me antihistamines but they were of little help.
After 24 weeks I stopped the treatment. It wasn't working. I still have hep C.
Now my psoriasis is the worst it's ever been. My shoulder has stopped aching and I no longer get cramps. My right leg still hurts when I exercise. It has taken four months for me to recover, but I feel that I will never be as well as I was before the treatment.
Having said all of the above, I do not wish to put anyone off trying to get rid of their hep C with interferon/ribavirin. I should have stopped drinking years earlier and tried the treatment. I'm sure I would have had more success than I did.

I was willing to go to week 48 if I was responding to treatment.

Inspirational Quote by Edward Everett Hale

2010-04-09T05:46:00.000-07:00

I am only one, but I am one. I cannot do everything, but I will not let what I cannot do interfere with what I can do.

~Thank you Correen~

Geno 1's CAN clear! by Carolyn

2010-04-08T17:36:00.000-07:00

Carolyn Diagnosed age 42 grade 1 stage 2 VL 6,170,000 Genotye 1a. Did treatment for 48 weeks. Difficult but a positive support system was major factor. Just today in fact, my 1 year EOT results came back. I am still clear. I'm going to go ahead and call it cured. Geno 1's CAN clear!

Beautiful Flower In A Broken Pot by Donna

2010-04-07T18:40:00.000-07:00

Our house was directly across the street from the clinic entrance of Johns Hopkins Hospital in Baltimore. We lived downstairs and rented the upstairs rooms to out patients at the clinic.

One summer evening as I was fixing supper, there was a knock at the door. I opened it to see a truly awful looking man. "Why, he's hardly taller than my 8-year-old," I thought as I stared at the stooped, shriveled body. But the appalling thing was his face, lopsided from swelling, red and raw.

Yet his voice was pleasant as he said, "Good evening. I've come to see if you've a room for just one night. I came for a treatment this morning from the eastern shore, and there's no bus 'til morning."

He told me he'd been hunting for a room since noon but with no success, no one seemed to have a room. "I guess it's my face ... I know it looks terrible, but my doctor says with a few more treatments ..."

For a moment I hesitated, but his next words convinced me: "I could sleep in this rocking chair on the porch. My bus leaves early in the morning."

I told him we would find him a bed, but to rest on the porch. I went inside and finished getting supper. When we were ready, I asked the old man if he would join us. "No, thank you. I have plenty." And he held up a brown paper bag.

When I had finished the dishes, I went out on the porch to talk with him a few minutes. It didn't take a long time to see that this old man had an oversized heart crowded into that tiny body. He told me he fished for a living to support his daughter, her 5 children, and her husband, who was hopelessly crippled from a back injury.

He didn't tell it by way of complaint; in fact, every other sentence was preface with a thanks to God for a blessing. He was grateful that no pain accompanied his disease, which was apparently a form of skin cancer. He thanked God for giving him the strength to keep going.

At bedtime, we put a camp cot in the children's room for him. When I got up in the morning, the bed linens were neatly folded and the little man was out on the porch.

He refused breakfast, but just before he left for his bus, haltingly, as if asking a great favor, he said, "Could I please come back and stay the next time I have a treatment? I won't put you out a bit. I can sleep fine in a chair." He paused a moment and then added, "Your children made me feel at home. Grownups are bothered by my face, but children don't seem to mind.."

I told him he was welcome to come again.

And, on his next trip, he arrived a little after 7 in the morning. As a gift, he brought a big fish and a quart of the largest oysters I had ever seen! He said he had shucked them that morning before he left so that they'd be nice and fresh. I knew his bus left at 4:00 a.m. and I wondered what time he had to get up in order to do this for us.

In the years he came to stay overnight with us, there was never a time that he did not bring us fish or oysters or vegetables from his garden.

Other times we received packages in the mail, always by special delivery; fish and oysters packed in a box of fresh young spinach or kale, every leaf carefully washed. Knowing that he must walk 3 miles to mail these, and knowing how little money he had made the gifts doubly precious.

When I received these little remembrances, I often thought of a comment our next-door neighbor made after he left that first morning.

"Did you keep that awful looking man last night? I turned him away! You can lose roomers by putting up such people!"

Maybe we did lose roomers once or twice. But, oh!, if only they could have known him, perhaps their illnesses would have been easier to bear.

I know our family always will be grateful to have known him; from him we learned what it was to accept the bad without complaint and the good with gratitude to God.

Recently I was visiting a friend, who has a greenhouse, as she showed me her flowers, we came to the most beautiful one of all, a golden chrysanthemum, bursting with blooms. But to my great surprise, it was growing in an old dented, rusty bucket. I thought to myself, "If this were my plant, I'd put it in the loveliest container I had!"

My friend changed my mind. "I ran short of pots," she explained, "and knowing how beautiful this one would be, I thought it wouldn't mind starting out in this old pail. It's just for a little while, till I can put it out in the garden."

She must have wondered why I laughed so delightedly, but I was imagining just such a scene in heaven.

"Here's an especially beautiful one," God might have said when he came to the soul of the sweet old fisherman. "He won't mind starting in this small body."

All this happened long ago - and now, in God's garden, how tall this lovely soul must stand.

The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart." (1 Samuel 16:7b)

Friends are very special. They make you smile and encourage you to succeed. They lend an ear and they share a word of praise. Show your friends how much you care. Pass this on, and brighten someone's day.

Nothing will happen if you do not decide to pass it along. The only thing that will happen if you DO pass it on is that someone might smile (because of you).

PLEASE, HAVE A WONDERFUL DAY!

Melinda's Story

2010-04-06T19:32:00.000-07:00

Hi I am 36 years old and live in Virginia. I found out I was hep c positive in Jan 2001. I had been having problems with my liver enzymes being elevated up to 169 for the alt's and 122 for the ast's. I suffer from chronic pain and fatigue. Doctors can't seem to make up their minds if I have fibromyalgia. I also suffer from sjogrens syndrome. I have already had one salivary gland and lymph node removed in my neck. Very painful surgery. They thought it was a mass. Came back with chronic inflammation and infections. I had my liver biopsy and was very sad when I got the results. I have cirrhosis. I am only 36 and have cirrhosis.

I have finally gotten my scripts for peginterferon and ribavirin. I will be on the maximum doses of both. I am scared and don't where my life is going right now. I am applying for pharmaceutical assistance because I have no money or insurance. I have been out of work for a year now and applying for SSDI. I think you have to be dead to get this. I want to go to work so bad but I get sick to often now to keep a job and it is not fair to my employer if I am sick all the time.

I am going to fight a good fight though and do all I can to fight this virus. I suffer bouts of depression though and hope it will not get me down when on tx. I will let all my friends know if my virus becomes undetectable. Until then I wish everyone luck that carries this dreadful disease. Take care Melinda

Dondondoodle's Hep C Story

2010-04-06T15:41:00.000-07:00

I’d like to take this opportunity to introduce myself. My name is Don, aka Dondondoodle. I am 49 years old, a father of three wonderful sons. My boys are Steven (18), Jonathan (11), and Elijah (2). I am married to the most wonderful woman in the world, Latoia. We live in Suwanee GA, a small town just north of Atlanta. My wife, kids, and family mean everything in the world to me. We are a family of “love and happiness”. This is the theme of our house and the way that we try to live our day to day lives: with love and happiness.
One morning, three years ago, my family and I received some news that changed our world. My wife and I both had doctor appointments with different doctors. As I pulled into the parking lot for my appointment I received a phone call from my wife with wonderful news that we had a baby one the way. I cried with excitement as I sat in the parking lot. I pulled myself together and went in to see my doctor for a follow up appointment. I was called back to the exam room, where I sat for almost an hour. Finally the doctor came in, sat next to me and told me that she had received the blood test results and that she had bad news. She told me that I had Hepatitis C. I did not know what C was. I had heard of A and B, but not of C. I explained to the doctor that I had been in a major motorcycle accident back in 1981. I had received 27 blood transfusions throughout 15 major surgeries. She explained to me that hepatitis was a blood-to-blood transmitted virus and that the transfusions were more than likely the reason that I had contracted it. Over the next few minutes I was told that I would die from this disease. I left the office and started driving to work. Crying and wondering how I was going to tell my wife. I arrived at work and sat in the parking lot and cried and cried and cried. What had started off as one of the most wonderful days of my life dramatically turned into one of the worst. As I sat in the parking lot at my job I started getting mad. How could God do this to me? What was he, some kind of a jokester? I pulled myself together as much as I could and completed my days work.

Later that evening, as I tried to be happy about my wife’s news, I finally mustered up the strength to tell her about my disease. To my surprise, she seemed to handle it very well. She said that we needed to get a second opinion and to start doing some research. We got on the computer to find lots and lots of information. The next morning I made an appointment with a gastroenterologist. During that visit I learned that having this disease was not a death sentence and that treatments were available. Shame on my primary care doctor. I fired her later that day.

Over the next number of weeks, I had many tests done. Blood tests, an MRI, ultrasound, and a biopsy of my liver. I had learned that I was genotype 1a, that I had advance stages of cirrhosis of the liver, and that I had indications of having liver cancer. The worrying really kicked in. I had also learned that I would be doing treatments and that they were not going to be easy. They would last for 72 weeks instead of the standard 48 to increase my chances of staying clear. Even with that, the odds were not what I was hoping for.

When all of this originally started, I owned and operated two businesses. A furniture manufacturing facility and a furniture and art gallery. I employed 29 people. My doctor told me that stress was not good for me while on treatments. He gave me three months to delegate anything that caused stress before he would let me start treatments. I closed my businesses and started a job at The Home Depot. Although the hours were rough, the insurance had great coverage. As it came close to being time for me to start treatment I talked to the store management, to let them know what was going on and that I was concerned about my hours while on treatment. The store manager was very understanding and told me that The Home Depot had my back and would support me all the way.
I started treatment in September of 2007. I was on Pegasys (180 mg doses) and 1200 mg doses of Ribavirin. The first shot was rough. Within an hour, I had chills worse than I had ever had. Within 2 hours I started getting very sick at my stomach. I went to sleep until the next morning. From the next day on, it wasn’t so bad. I felt like I had a bad flu until the 5th week. After then it seemed to have settled down even more to where it was only giving me the flu-type symptoms for a few days after each shot.

On December 16th my third son, Elijah was born! I was in the room when he came out. I cut the cord. My wife had given birth to a healthy 6 lb, 13 oz beautiful boy.

By the end of the third month of treatment, I was called into the office at work. To my surprise, I was being fired. I had clocked in late for work 4 times that month. Even though I had been late lest than 15 minutes each time and it was on the days after my weekly shot, I had gone against the company policy. They seemed not to care at all and I was fired for the first time in my life. The reason given was ‘failure to follow company policy’. It was a week after my son was born and just a few days before Christmas.
I took the long drive home, dreading, again, breaking the bad news to my wife. Again to my surprise, she was more understanding than I would have ever imagined a wife could be. She told me not to worry, that we could make some changes in our lifestyle and everything would be ok. I was to become a stay at home dad and she would make the money. She really made me feel good by telling me that she thought it would be for the best and that it would save us money by not having to pay childcare and the boys would have more time to spend with their dad. Wow! What a woman. I have been truly blessed.

My wife shortly started back to work from maternity leave. Some days before she would leave for work, she would make a palette in the living room floor and my baby boy and I would spend the day together, lying together, watching “Yo Gabba Gabba”. What a cool show! Anytime I ever felt bad, I would look at my son and he would make me smile and make it all worth while. He seems to be a blessing, sent by God to get me through my sickness.

Over the next 13 months, I suffered from not only the regular side effects of the treatments but also the mild case of psoriasis covering over 90 percent of my body caused by the treatments. My dermatologist had put me on Enbrel and then Humara treatments as well to control the psoriasis. 4 times during my treatments I ended up in the emergency room with my blood levels so low that I had to be emitted to the hospital. Every time the hospital doctors would try to take me off of my hepatitis treatments. I refused. I was determined to make it to the end. On the 70th week I was suffering severely from side effect of not only the hepatitis treatments but the Humara treatments as well. My blood counts were lower than they had ever been. The Humira treatments had caused severe gastrointestinal problems and I was so sick that I could not even drink two sips of water to take my pills with out everything either coming up or running out. My hepatitis doctor at that point said that I had had enough. To stop taking the ribavirin and to stop the Humira shots and to just take my last two pegasys shots.

The virus had become non-detectable after week two of my treatments and I had stayed clear the whole time. I was excited that it was all over with and that I had made it. Within a week I started feeling better than I had remembered ever feeling in a long time. At week two I started not feeling so well. I was back at the doctor to check and see how my blood levels were doing. I mentioned that I was not feeling as well as I did the week before and I asked my doctor to please have my viral load checked while he was having other blood tests done.

Sure enough, the virus was back. I was so upset, mad, and worried. The madness and worrying consumed me. I had to have some relief from the worry. I could not shake it. I prayed for God to give me peace. One day it came to me that there was nothing else that I could do. I had done everything humanly possible. I decided at that point to turn it all over to God. I could not handle the worrying anymore. I prayed that God would take the worry away from me. During my prayers, I realized that God was going to be with me through whatever it was that he was going to do. I had always known that someday I would be going to heaven. I had given my heart to the lord many years before. I told the lord that I was ok with whatever he had in store. I had come to peace with it in my heart and I was free from the worry. I wish that I had done this from the start. It would have made things much easier.

In October, I had two heart attacks, a week apart from each other. I had two arteries that were severely blocked. I now have two stints behind my heart. I am eating healthier than I ever have. I stopped smoking after 37 years. I walked more than I ever have. I am thankful to have been left to live. It truly must not have been my time.

Today is January 23, 2010. I will be starting treatments again on the 27th. I am excited to finally be attempting this again. I will be doing Pegatron this time. I am convinced that it is going to work this time around. I am claiming this victory in the name of God before the battle even starts. I want to get on with my life and I hope to be able to return to work someday.
I find it very rewarding to be helping others with their journey with this terrible disease. I feel that I have much to offer. I have been very blessed with a loving, caring family and I hope that I can pass some of the love around.

We are here to love one another. So let’s do!

Dondondoodle

Get Tested - Brooklyn Eagle Article

2010-04-05T19:04:00.000-07:00

Everyone Should Be Tested for ‘Hidden Disease’ of Hepatitis C
by Brooklyn Eagle (edit@brooklyneagle.net), published online 09-23-2009
By Betty Vega

There are an estimated 200 million people worldwide infected with HCV — ”making it one of the greatest public health threats faced in this century, and perhaps one of the greatest threats to be faced in the next century. Approximately five million people across the country are infected with Hepatitis C. It is five times more prevalent than AIDS and approximately 10,000 people die annually as a result of HCV. 65% of those infected with Hepatitis C are between 30 and 49 years old.

Hepatitis C is often called a “hidden disease” or “silent epidemic” because those infected with HCV are often unaware for 10-30 years after exposure. The symptoms of HCV are easy to misdiagnose and often resemble the flu or a variety of other conditions. When symptoms are present they can include extreme fatigue, nausea, liver pain, and depression.

Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver. This causes inflammation of and sometimes significant damage to the liver, thus affecting its ability to perform essential functions. There are several ways one can contract the virus. Having had a blood transfusion prior to 1992, being born to a mother with hepatitis C or needing a C-section; having sex with an infected person (if blood is present); being tattooed or pierced with unspecialized tools that were used on an infected person; getting stuck accidentally with a needle used on an infected person; sharing an infected person’s razor, hairbrush, comb or toothbrush; sharing drug needles with an infected person and manicures or pedicures.

This is where the need for education and awareness arises. Through standard blood workup procedures, hepatitis C will not show up. Unfortunately even with elevated liver enzymes, doctors don’t equate that with hepatitis C. For the most part, physicians don’t know nearly enough about the virus. People should see a gastroenterologist or better yet, a hepatologist, who will have more knowledge about diagnosis for hepatitis C. The only way to determine if you have this virus is by having a hepatitis C test, exclusively.

Without treatment, approximately 20% of those untreated will develop cirrhosis, (fibrosis occurs when extensive scar tissue develops), liver cancer, or will need liver transplantation (when liver no longer can function) or face death.

I went through years of annual blood workups displaying elevated liver enzymes and was told it meant nothing. Could be from taking other meds or being overweight; never going forward with any other testing. I met a new primary care physician in 2002 who, after seeing my blood results, told me to get this other test I had never heard about. So I went to the lab, got tested for hepatitis C and got the phone call at work. I was positive.
My reactions were mixed; mostly shock. I did, however, follow her directions and saw a hepatologist who treated me for a year and a half. The news was wonderful. I had cleared this virus. It was four years September 13th. I’m one of the lucky ones. This year I lost a couple of friends who were never treated for the virus. They became quite ill and eventually their livers gave out. It doesn’t have to be that way. I’ll never know how I got it or exactly how long ago. At this point it doesn’t matter. Getting tested is the only thing that matters. It’s life or death.

Betty Vega, a hepatitis C survivor, is support group facilitator for the disease at Long Island College Hospital. She can be reached at BettyV444@aol.com for more information.

City Limits Article - Nekoro Gomes

2010-04-05T18:55:00.000-07:00

When Betty Vega first learned that she had Hepatitis C eight years ago, she remembers being stunned. Vega, 58, had been aware of having elevated liver enzymes in her blood, but doctors had assured her they came from benign sources. After all, says Vega – a music promoter in Park Slope – there was no apparent cause, with more than 20 years past since any college-era sampling of drugs, a primary risk factor that doctors often say necessitate a test for the disease.~

Upon learning of her positive diagnosis after a perceptive doctor suggested she get additional testing, Vega was fearful and confused. “From what I had read [about hepatitis C], I was convinced I was going to die. I thought it was something that had to be much worse than HIV," she recalls. In fact, a subsequent liver function test would show that Vega was in the second stage of hepatitis C infection, a point at which the liver has become inflamed and mild scarring, or fibrosis, had begun to form.

Vega began to educate herself and after finding a doctor who specializes in hepatitis C treatment, she was able to clear the virus from her body in 2007, six years after first being diagnosed. That positive outcome is "on the rarer side," she says. According to the Centers for Disease Control, up to 70 percent of people with the virus will contract chronic liver disease, and up to 20 percent will develop cirrhosis.

Today Vega considers herself lucky that the disease was caught at a treatable stage, but her work as a patient advocate and support group facilitator for chronic hepatitis C victims has prompted her to get involved in both the politics and policy surrounding the disease. And, even as she’s getting a new support group going at Long Island College Hospital in downtown Brooklyn, she believes not nearly enough is being done to educate people about the disease. Vega does not appear to be alone in that – this past July, the state’s health department announced the launch of a $270,000 public awareness campaign that will use billboards, subway and bus shelter advertisements to promote early testing and treatment for the disease. “Over 200,000 New Yorkers have hepatitis C. Are you one of them?” the campaign asks.

The campaign is a continuation of an earlier educational effort for viral hepatitis diseases that was first started in 2004 after many health care providers and hepatitis C advocacy groups called for the addition of a toll-free hotline in both Spanish and English. So far, more than 400 people have called in from throughout the state to get basic information on the disease since the campaign was re-launched in mid-July.

Under the radar

A health bulletin from the Department of Health and Mental Hygiene (DOHMH) released several years ago says that 200,000 to 300,000 New York City residents are infected with the virus and most are currently unaware of their status. The most conservative estimate labels 2.2 percent of the city's [non-homeless, outside-prison] adults infected, higher than the nationwide average of 1.8 percent.

Yet, some advocates say, the amount of funding currently available for hepatitis C education and awareness is not nearly proportional to the number of people at risk of contracting the disease.

Part of the reason that advocates for hepatitis C say education about the disease is needed is because of hepatitis C’s elusive nature. Unlike other viral hepatitis strains, there is no vaccine against the disease and it has to be tested for specifically: victims often exhibit no visible symptoms for decades after infection. As a result, there is no way to tell exactly when a person may have become infected or even pinpoint the exact number of infections that exist throughout the city.

And although the sharing of needles with an infected person, most often through intravenous drug use, is thought to be the most common way the disease is contracted in New York City, someone can become infected in any circumstance where they come in contact with an infected person’s blood. In fact, among the many task force committees that provide resources for sufferers is one that targets how to control infection among the city’s many tattoo and piercing parlors, nail salons and barber shops as well.

According to the latest data on newly reported people in New York City living with chronic hepatitis C, the most common age for new diagnoses is between 50 and 59, which adds another challenge to the city’s effort to get people to properly screen themselves for the disease.

“A lot of people who may have done drugs [in the past] have stopped,” says Eric Rude, director of the Office of Viral Hepatitis Coordination at DOHMH. “So they’re probably not going to be perceived to be at-risk...a general [education] campaign would be appropriate.”

Rude says a significant portion of the money the department receives through the state's health budget goes towards public awareness efforts around the need for early screening, in addition to helping to fund several comprehensive hepatitis C treatment centers throughout the city.

In order to reach populations most at risk for contracting and spreading the disease, DOHMH has worked to better coordinate testing and treatment resources through its support of several interconnected task forces made up of providers, local health clinics and support groups that meet several times a year. Rude adds that free testing for hepatitis C is done in many of the city’s STD clinics, as well as through community-based organizations that are part of the city’s task forces.

Although the $1.19 million in state funding that went towards hepatitis C programs in New York State for the 2009-10 fiscal year is a reduction from the $1.58 million allocated the year before, Shari Newman-Foster of the statewide hepatitis C advocacy group, Status C Unknown, says the inclusion of funding is still a hard-won gain for hepatitis C advocates in the state.

“Governor Paterson cut funding for all new programs by 50 percent,” explains Newman-Foster. “But [the state] kept the line item for hepatitis C [programs].” That’s one of several signs she sees of the state taking more action around the disease.

Grassroots efforts

Mireya Delgado, a senior patient care manager with the Latino Organization for Liver Awareness (LOLA), a Bronx-based nonprofit that works primarily with Spanish-speaking clients dealing with chronic hepatitis C, also points to the toll-free hotline in both Spanish and English as an improvement in the state’s efforts.

Delgado says that prior to her nonprofit’s founding in 1994, there was little information on severe liver disease and the effects of chronic hepatitis C in Spanish. The organization also operates its own bilingual hotline.

When City Council restored $480,000 to a hepatitis C public education campaign, it noted that of the 200,000 to 300,000 New York residents estimated to be infected with hepatitis C, approximately 40 percent are Latino.

Through the grant from the city council, along with matching funds from the state, LOLA was able to use $750,000 in funding for hepatitis C education for fiscal years 2006-2008.
“Media is very costly,” explains Delgado. “We do a lot of community outreach, presentations at rehab centers, clinics, comprehensive medical centers and health fairs. With the grant we were able to conduct trainings and at one point we were able to train more than 200 trainers who were in turn able to go back to their agencies.”
But while Delgado acknowledges that the type of support needed to do community education for hepatitis C programs can be expensive, she says it pales in comparison to the cost of doing nothing for the largely Latino population she works with, which she says is often unable to access health insurance due to their immigration status.
“We’re seeing cases that are often diagnosed too late and they’re not a candidate for treatment ... much more awareness is needed [for people] who are still not aware and who are walking around with it.”

Wishing the best of luck to all! Kathleen

2010-04-05T17:00:00.000-07:00

I am a 60 year old woman who often imagines that she is much younger; it might be a case of arrested development? - For a few years I knew I should get tested for Hep C because I had a history of some risky behaviors in the distant past and had also been exposed to a lot of blood in my work as a health care provider. I had quite a few friends and family members who had been diagnosed and gone thru treatment, including my little brother, my best friend and several former boyfriends. But I put it off, didn’t think about it too much, and was feeling pretty well most of the time. Sometimes in the 1970’s I felt pretty strange and wondered if my childhood malaria had come back. I did have mild to moderate fibromyalgia for about 20 years until the mid-90’s, and then it went away.

My brother died in 2004 at the age of 51 of liver cirrhosis. I was very mad at him for a long time, I didn’t understand at that time about brain damage perhaps making it impossible for him to stop drinking, and the ammonia in his blood affecting his mind. It was like he got taken over by an evil alien. He kept drinking during his Hep C treatment, which is probably a lot worse than doing no treatment at all. I was the only one with him when he died, he never thought he was going to die, he thought he would get a liver transplant. I spent 2 weeks cleaning out his house – Yikes! - I have one of his cats now; I brought her home on the plane.

I got tested in 2005 and wasn’t surprised to be positive for Hep C. Genotype 2b, the same as my best friend. Found a good hepatologist, had a biopsy which showed no liver damage, mild inflammation. Normal LFT’s when tested. So I haven’t done treatment and may not ever. I do have some RUQ pain which I wonder about, some blood sugar issues, and some eye issues. Every time something new develops you wonder if it is associated with the virus.

From my teens to mid-20’s I did some serious sporadic binge-drinking and pot smoking, but after that I was always on call for work and starting a family so I quit, I had to have all my remaining wits about me! I was always into good healthy food and outdoors exercise, and lucky that I never liked cigarette smoking.

In 2008 I attended a workshop put on by the Hepatitis C Support Project and became a Hep C Educator. So far I have been active on some websites and have written a couple of articles for magazines and newsletters, hoping to raise hepatitis awareness in health providers. I have some other ideas about things that I might do in the future.

I haven’t told very many people that I have Hep C. I don’t want my children to worry about me; I don’t seem to be very sick at present. I’m a pretty private person and a bit of a loner, I don’t like people talking about me or feeling sorry for me. So I’ve just told a few people, mostly those who also have it. Maybe this will change in the future?

Our American health care system is frustrating, inefficient and expensive. I’ve been self-paying most of my life and it’s difficult to find out how much things are going to cost. Often it turns out to be much higher than the quoted price. Many people have limited access to care due to lack of money and insurance. I believe that providing basic health care should not be a source of high profits and great wealth, this seems wrong to me. I feel we need to take it out of the hands of the for-profit insurance companies. Emphasize prevention and healthy behaviors. Informed choice in health care is an important principle. It’s a shame that it has become such a partisan issue at present. We all need to do our part; we are all our own primary health care providers because of all the life-style choices we make every day.

Lilian's Story

2010-04-04T16:41:00.000-07:00

I should call my story the needler who was needled. My name is Lilian and I am 52. It seems like all my life has been connected to needles one way or another. I have been trained as an electrologist 32 years ago and had my own business working at and operating a busy day spa. During my years in business I also have performed skin care, permanent makeup, piercing, tattooing and even a process called acne scar needling. I remember that we did not wear gloves or used disposables until the early 80's. Sterilization procedures were debated and approved as industry standards around this time. I can honestly say I have been extremely vigilant about cleanliness for my establishment and being an example as I also operated a school over the years.

Starting in the 80's I also became an avid fan of accupuncture and faithfully visited my dentist at least 5-6 times a year for extensive procedures.

5 years ago as part of my license renewal application I had the 3 part hepatitis vaccine - which I think was a coincidental good idea.

2 years ago after a Red Cross blood donation I was notified that I had hep c. My viral count came in at 15 mill. and now has climbed to 20 mill. Fortunately liver test, ultra sound and fibroscan are normal and I am being treated in my home country out of the USA where I have free health care.

I would like to call the attention of all the cosmetic industry and body modification workers to get tested - even if it is through blood donation. Obviously - in my case it would be a miracle not to have the virus with my exposure rate and years around needles.

Right now the hope is the new medicine coming out in 2011, keeping my lifestyle and liver healthy. Also never to be afraid of this virus that is now part of my body. I believe that all experiences in life happen for a reason. Remaining positive is the greatest gift we can give ourselves.

Laurie's Amazing Story of Faith

2010-04-04T06:51:00.000-07:00

I was born in September of 1966. I was always feeling unloved except when my mom was around. I knew she loved me; she showed me. My mom is a very loving and caring person. My dad was a truck driver My parents split and divorced when I was 8. My mom raised all three of us by herself; three children and no help. I don't know how she did it but I know the lord helped her through.

I grew up with my older sister Robin, 1959, and a brother Kenny, 1960 and at 15 my sister found out she had Multiple Sclerosis. But my mom believes she may have had it much younger because she fell around more than other kids her age; one time, I will never forget, she got hit by a car.

I always grew up feeling out of place because of being overweight and so in school I read the how to get popular books and they worked. The secret is if someone that doesn't like you or has ever expressed not liking you or try to get to know you then when you see them just say "Hi" you make the first try. That's the secret and I took it one day at a time.

My brother is now married and has a son. Robin has been in a nursing home since 1995 due to her progression of the MS. I on the other hand never knew or expected what was ahead for me. One night changed my life forever.

December, 1988 the Friday night after Christmas because I was excited about going out with my friends to "Tully's" the local Bar & Grill. I put on the beautiful Gold satin blouse along with my black pants my mom gave me for Christmas. I was sitting at a booth window which faced the parking lot of the restaurant and heard noises outside so I looked and there were 2 men beating terribly on another man all alone and others were standing there doing nothing. My friend Toni, (she's a longtime school friend) and I went outside to try to help in some way and as we went out the door I remember telling the door man what we saw.. We went outside and yelled as we walked closer (nothing stops me when someone is in need of help). As we got closer we told the guys to stop and that the police were on their way and 2 went one way the other guy in the opposite direction. Toni and I started to walk away. Not even 5 feet away we heard them running back toward the one guy and BAM!! Down he went on the ground. The police started coming into the parking lot and no one had seen if this guy was ok. So I went towards the guy to ask if he were ok and he said "Please help me" and what you do but help. I reached down and pulled him up between the two cars and without realizing there was ALOT of blood, you couldn't see because it was dark. In the 80's AIDS was just being brought out and so I freaked. My hands were covered in blood. I immediately went to the doorman to let me in to wash my hands and he told me last call no one can enter and I even showed him my hands. Well I took a second to figure what in the world am I going to do so I looked around and there was snow on the ground in small piles so I stuck my hands in the snow in and out in and out until I couldn't really see any blood.

I got home and washed, scrubbed did what ever I had to do. I noticed my hands were stained kind of red. I checked for cuts and there was a small cut on my right thumb that hadn't quite healed yet. I forgot all about it the next day and went day to day about my business.

Then came February 1989, my complete physical....Blood work and lots of it. Then results showed non-A non-B hepatitis, so the testing kept going about once a month to monitor.

* 1990 - First round of treatment* 1993 - September 18, I got married then one week later ended up in the hospital for a severe pelvic infection then two weeks later went back for surgery due to ovarian cysts. While under they found signs of cirrhosis
* 1999 - 2nd round of treatment
* 2001 - Rotator Cuff surgery and tested my liver, and the cirrhosis still the same* 2004 - Blood work is abnormal and now my cirrhosis has changed to stage 2, there was discussion of a liver transplant but we'll wait right now because my numbers aren't where they need to be, also I found out I am Geno type 1-A Chronic Active
* October 2004 - Filed for my Disability per doctor's orders
* November 2005 - Started treatment for 3rd time, very different this time and much sicker than in past. Symptoms were very sick. The medicine ate the lining of my stomach and hurt so bad and was very uncomfortable so the acid reflux had gotten worse also. I had many headaches much worse than the daily to every other day headaches I was used to still bothered me.
* March 2006 - Blood Work showed change in levels of Viral Load went to -50 which indicates no signs of Hepatitis C, BUT don't get excited yet that's why Hepatitis C carries the sign of the dragon, because there is NO CURE and NO VACCINE it hides for a while then attacks again.
* November 2006 - Ended treatments due to doctors orders and showing no signs right now

As of today I have the following: Please for more information I have linked most of my symptoms.

• Stage 2 Fibrosis
• Enlarged Spleen - due to liver not functioning at 100%
• Thyroid problems - under active
• More fatigue, very very tired!
• Spasms Cramping all over
• Hurt all over in different Ares from side to back to legs
• Joints hurt
• Swelling
• Dry Mouth
• Noise Bleeds
• Trouble Concentrating
• Trouble Remembering
• Itchy skins area's - right wrist area, occasionally under both breasts (sorry)

I am currently fighting for my Disability but my age they say is hindering the process, but my Faith over-rides that theory. The list goes on but I will up date as each day goes.

Please continue to pray for me and my husband Rich for finances, physical, spiritual guidance, encourage us and comfort us with prayers for peace. I know the lord will take care of us but with Rich the ONLY income it is getting more and more harder to keep going. But I am NOT giving up Hope or Courage!

God Bless You, Laurie

Doctor Rudman is going over my lab work because it was my 3 month check up since January.

Well your viral load is up and the virus is back up to 2,200,000. (My heart sank), then he said we need to do another biopsy since my last one was in 1999 when I had rotator cuff surgery and they took a biopsy then. This will show how far the cirrhosis has spread.

After Biopsy I have to stay at least 8 hours to be sure of no complications. The doctors were telling me there is a new medicine out that's a shot per day along with pills again. But, they say I shouldn't get as sick as the last time. ugh.

Please keep me in pray for Finances and Health

Liver Biopsy Day 8:30am checked in short wait then sent back to Same Day Surgery the normal Blood pressure, temperature etc...Go over procedure with OR Nurse 10:40 taken to Radiology and no time to wait then in to a room There were 3 Nurses, the sonogram Tech, one doctor and a doctor in training, and one nurse to keep me calm I am very nervous at this point with all of these people in the room but for Stat procedures you have too in case of complications. The Doctor told me when to breath, hold it and not move. If one move it could slice the liver and I am not going there.

Ok now it's time, he uses the sonogram to locate the liver, then finds his spot (mind you in 1989 my first biopsy wasn't so easy and pain free I had one nurse and one doctor and no sono machine, just imagine, ewwww) He says you will feel a bee sting and then yet another, in he went, then he says Laurie I am sorry but I need to go in again; I didn't get enough, (Did not want to hear that) so in he went and it was over.

Went back to my room now lying only on my right side facing the next 6 hours in that position. (Bleeding from the biopsy can help clot the area so no internal bleeding later.) I got one shot of Morphine and I tried to sleep but it didn't help, 2 hours later my mom and Aunt came back and they were glad to see no complications. My best friend and her mom came back to pray and talk to me before heading back 2 hours away. So after 3 hours another shot of morphine, you will feel a little sleepy, wow I feel it now ready to sleep for years. So off to la la land I went I was discharged at 6:30pm

Now the next week would be the hardest, moving and waiting on results.

Dr Rudman and another doctor were explaining bits and pieces to me but could only grab what I could understand. My Liver is now stage 4 cirrhosis and I NOW have what’s called Fatty Liver Disease (NASH). This now grows concern for my doctors because he explained to me that the two Hepatitis C and Fatty Liver Disease (NASH) are FATAL together.

So now a new Disease to fight against.

My doctors are saying we have to put the Hepatitis C to the side and get to the Fatty Liver right away. Because Cryptogenic cirrhosis is a common cause of liver-related morbidity and mortality in the United States. Nonalcoholic fatty liver disease (NAFLD) is now recognized as the most common cause of cryptogenic cirrhosis. However, the diagnosis of cirrhosis in patients with NAFLD appears to be delayed compared with those with other chronic liver diseases and thus carries a higher mortality rate.

Please keep me in prayer!

Today I got the call from Dr O'Conner about my PET Scan results. hummmmm

Well, now I have swollen lymph nodes located in the chest and the spleen looks suspicious (what does that mean?) I had to set up another CAT Scan and a visit with a Lung specialist. Not sure why on that one this was all over the phone and not much was said. I was in awe. I April I have my Lung Specialist appointment.
Now Dr O'Conner did tell me where the Lymph node is located in the chest will be easy to get to do a biopsy. By cutting about an inch on my neck then follow down to the chest to get a nice piece he called it.

Wow this is just getting more and more interesting every day.

Sometimes I feel like a basketball going from one doctor to another then sometimes I feel like a car you fix one thing and then they find something else. I am just blank feeling you know. I guess because now it is getting I guess closer to finding what is going on? Not sure it is very puzzling. Anyway a Lung specialist and not telling me over the phone? I am so lost now. I still need lots of prayers to continue for me and my family.

It has been a very rough few months, just think in 6 months it will be a year when we first started this journey in finding the problem. I sure hope we are getting closer I really do.

I have so many friends keeping me uplifted and others with their prayers I feel them. I even have been waking up in the middle of the night thinking about certain people so I start praying for them not knowing which isn't what it's about it's praying and keeping the faith that matters and all else is the victory and the testimony I give to others.

I will overcome and rise again!!

God bless you and thank you for being a very good friend during such a crazy time in my life.
No matter how bad this comes out I am a child of GOD and he will have a reason. I told my mom if my life was ending no matter what I go through I am one to do what I can to save another or more.

Victoria's Story - Sweet Dreams

2010-04-03T17:30:00.000-07:00

My name is Victoria; age 57 with geno type 2A. Had Biopsy in 2000 and the results were level 1-2 fibrosis. I had a fiborsure blood test march 2009 and it came back 2/3 on the scale. I had another fibrosure test last week and am waiting for results. I asked for a biopsy but the doctor doesn’t want to do it. I want one ASAP and will find a way to get it although I am on med/cal and not everyone takes this insurance. I first found out I had this virus in 1996; I knew genotype 2 responds well 80% of the time. I’m waiting and waiting for treatments to get better as it has since 1996, and will continue to get better meaning new protocols, etc. I can withstand the side effects. Treatment can make you wish you where dead; what I do not want is permanent damage. >>>>>. I wish I could see a list of how many people within the last couple of years following treatment have had serious damage. Then I would know some of what my chances are in terms of side effects, although people experience them differently. I know some people have irreversible damage. I want all the information I can get when I finally do treat. I have been so close to treating so many times in the last 8 years.
Thank you for this blog. I know we all share a common virus and only want the best for each of us; giving each other support and love always.

Thank you, sweet dreams always...

Janis and Friends - A Little History

2010-04-02T15:22:00.000-07:00

Here's a little history on how Janis and Friends got started and how it's kept going. Janis started the forum in 2000. She was already very sick at the time and her girlfriends helped with the forum. There were seven of them and you can still see a reference to that in our web address. The firendship7 part. When Janis passed away in 2001 someone had to be the official host of the forum. It's a job none of the girlfriends wanted and PattyVR1 drew the short straw. Patty preformed the host duties here till about 4 months ago. Janis always had a dream of having a web site where people could find good accurate information about HepC. One of the other girlfriends, Tina - Myer1, set up the web page and dedicated it to Janis. Tina still maintains the webpage to this day. She pays for it out of her pocket and will accept no help. If you look at the webpage you will notice there are no advertisements there. No advertising = no money being made. The advertisements you see here are Delphi. That’s how they make money. Janis & Friends is truly a labor of love. BTW if you upgrade to a Delphi Plus membership you will no longer see the adds on the forum.

Administrative issues on the forum are handled by the host and two managers. Helping with the forum is something all our members do. All you have to do is be supportive of other members. You can post articles that pertain to HepC too if you would like. We do make sure that the information on the forum is accurate so if inaccurate information is posted one of the managers will question it. If you want to help and have a little badge that shows you are part of the staff we do need chat room moderators. Chat room moderators make sure our chat room is a safe place for everyone. When new people come into the chat room the Moderators make sure that they get the information and support they need. Like the message boards, our chat room is also G rated and if a troll comes in they kick it out. If you’re interested in helping out in the chat room you can find me there most mornings from around 5am your time till 8 or so or look for Old hair in the afternoon. The Moderators have a star by their names in the chat room so you can tell who they are. Getting to be a Moderator is kind of like an OJT thing. Come into the room with a Mod, learn what they do and after a while we'll ask you if you interested in being a Mod too.

Anyway what makes Janis & Friends such a wonderful place is our members and everyone contributes to that.

This article was submitted courtesy of Mike. Thank you for educating me on how this site works. Betty

Just honest words from Richard Garriz

2010-04-02T14:51:00.000-07:00

My name is Richard Garriz and I'm writing my personal story about how Betty.... and Janis & Friends web site has saved my life & happiness and stopped me from ever getting high or stupidly drunk again... I have wasted at least half or my life using drugs and alcohol and have spent a lot of time in county jails and prisons ... I would get out and just start the cycle all over... I got hep c from my stupid behavior and was so lost and actually trying to get it over with and kill myself even quicker with the drugs & alcohol... Alcohol can be used responsibly but I abused it badly... My drug using was a giant problem and I liked it so much I learned how to make it 5 pounds at a time and not proud of it anymore.

Betty and her project is such a good thing as well as Janis & Friends website!!!!!!!!!!! By supporting them both we would be saving millions of lives and even help save our counties, state and government a lot of money housing addicts in jails and prisons and funding their probation and parol . This is such an important thing for our country.

Cheryl's Hepatitis C Story

2010-04-01T15:09:00.000-07:00

I am 47 years old and was diagnosed last year after test results showed my 16 year old daughter tested positive for the Hep C virus. Her doctor said I should be tested to rule out Hep C. My tests came back positive for the virus. I was in total shock when I learned the news that my daughter was positive for the Hep C virus, then to find out that I was the one who gave it to her is beyond comprehension. I felt like I was punched in the face. Sadly, I know how I contacted it. For about 5 years in the early 80's I experimented with IV drug use. When I married in the late 80's and decided to have children, I told my OBGYN of what I did and asked him to test me to make sure I didn't have HIV or anything else related to IV drug use. Happily I was told I didn't have HIV, and that I was in great health. Sadly, I wasn't tested for Hepatitis. I went on to have 2 children; my son (who is older) and my daughter. My husband has not been tested yet. My son doesn't have health insurance at the moment and I don't want this to be considered as a pre-existing condition for when he does get it so he is waiting. My husband, for whatever reason, won't go get tested. He also dabbled with drug use in the early 80's and may very well have it. My daughter and I have both started seeing a gastro doctor, and have decided to wait until newer treatments comes out with the added protese inhibitor. This, from what I have learned, has a higher success rate for genotype 1a, which we both are. I am having a liver biopsy in July, to see what the damage is to my liver. I am not experiencing any symptoms right now, other than some fatigue. But I think that is from my busy life. I do not drink alcohol and have not done any drugs since the mid 80's. I am scared for my daughter, why couldn't I just be the one to get this awful disease? Not her, if any of you have any reason to believe you may have been exposed to HCV, please go get tested as soon as possible. If you are positive, please get your children tested also. The sooner you find out the better your chances are of ridding your body of it before it has a chance to kill your liver! If you test negative, be thankful for you are very lucky!

Cheryl in MD

Hepatitis C: Dying for Change!

2010-04-01T08:34:00.000-07:00

Click on triangle to view video
From YouTube™

The Silent Killer: Hepatitis & Your Liver (YouTube)

2010-03-29T17:08:00.000-07:00

Joe's Hepatitis C Tale

2010-03-29T16:06:00.000-07:00

I am calling this phase 1 as I am extremely hopeful on receiving a liver transplant sometime this year. Phase 2 will be post transplant and as of yet it remains to be written.

I was first diagnosed with hep C in the late 1980's. I had a routine physical and the doc found my liver enzymes elevated and said to stop drinking for 6 months and come back. Six months later there were more tests and they called and said the doc wants to see you. OK. He says "you have hepatitis C." What the hell is that I ask? "It's a virus that attacks your liver and it can be fatal." Well, my head was spinning at that news and the rest of the discussion was a bit of a blur. He was sending me to a gastroenterologist for more follow up. Went home and told the wife and thank God she is a very level headed woman. Always knows what to do as far as health issues are concerned. She works in health care and has been the rock in my life. I'm pretty sure I would have been dead many years ago if not for her. I belonged to an HMO at the time and they used the specialists in the HMO's clinics. Upon meeting the GI for the first time it was obvious to me that he was very competent and concerned about my health. Long discussion on how to contract the virus. No, I wasn't and never had been an IV drug user, no transfusions, etc. Couldn't figure it out and still haven't. I have pretty much assumed that I got it somehow from my older brother who was a hard core heroin addict. I never shared the fun with him and never saw him again after 1980. With an addict you either cut them loose or they will take you and everyone around them to the bottom with them. And that bottom is pretty far down. I was the last in the family to try and save him but after almost getting my new girlfriend (now my wife) arrested, I cut myself off from all contact. He passed away 10 years ago waiting for a liver transplant. So being in the same position makes it that much scarier for me now.
So back to the GI. He said to come back in 6 months and when I did, there was a new GI. She asked all the same questions and it was a repeat of the first visit. Come back in 6 months. And you guessed it, another GI, same discussion, etc. The HMO was a revolving door for new specialists. Screw this. I went and found the first GI that I had seen which has proved to be a very good decision on my part. I have followed him through about 5 different practices and now he heads up one of the largest and best in our area. He said he only had one other patient longer that me. It's professionals like him that I always stress to anyone who has recently been diagnosed that a good and trusting relationship is so important with your health care providers. There is no place for uncaring hacks with poor attitudes in our path of dealing with hep C. Had a biopsy somewhere along the way. 1992 I think. I already had mild cirrhosis by that time. My GI started me on the treatment of the day which in 1994 was alpha-interferon. Had all kinds of warnings about side effects, symptoms, etc. Nothing. Never even had so much as a headache. I was a non-responder. Shit. A few years later, 1998 I think (The years have become a blur and it's tough enough to keep track of my immediate care let alone 20 years ago) I was started on treatment with Interferon and Ribovarin. Got the same warnings about symptoms, side effects, etc. Yeah, yeah. I've heard them before. Well, the first night of treatment was a taste of my path into hell. I had never been so sick in my life. I was actually having convulsions. It got better after that. Well, compared to the first night anyway. I developed a few other side effects that were horrible. But the absolute worst was the sleep deprivation which unfortunately has continued to haunt me to this day. I know it is one of the symptoms of end-stage liver disease but it never left after treatment. And I proved to only have a partial response and treatment was stopped after 6 months(?). I think it was 6 anyway. And I have continued to plod along dealing with the complications as they have reared their ugly heads. Esophageal varice bleeds, the first in 2006 with the last being in 2008. Very bad and my first experience with encephalopathy. That's a condition I hope you never have to experience. Total disconnect of my brain from my body. I could think some thoughts but not express them. Probably a good thing because at one point as one of the ICU nurses told me her husband worked at the same place as me and told me his name, I just couldn't get out the words, "I work with your husband. He's a complete asshole". Not what you should be telling your care givers so it worked in my favor. And I had been in a hospital enough times to know how to work the call button. But do you think I could figure it out when I had to pee? No. Boy do they get upset when you get out of the bed. Of course they just tie you to it after that and you just pee yourself. Loads of fun if that's your fetish. Unfortunately it's not mine. That's when I was referred to a transplant center for evaluation. A full week of more tests than I knew existed. So many questions and interviews. One of the things that have bothered me over time is the endless questioning by every health care provider that I have ever met. How did you get it? Don't know. Then the "you're lying" look. I mentioned this to my GI and he explained that they want to know if there are any other risk factors and I should be patient. To a point. Then he said "just tell them you slept with Pamela Anderson". I tried that once to a very poor reception. Probably won't do it again. But I was approved for transplant and am waiting patiently. Have dealt with ascites, its better now. And I am in end-stage liver disease with a MELD score of 15 and now have HCC (heptocellular carcinoma) with the tumor currently 1.9cm in size. Next MRI is in May. We'll see what that brings. But through the last 20+ years my family and I have enjoyed life as much as possible. We love to travel and have always taken at least 2 vacations a year. The beach is the favorite and skiing also ranks way up there. Plenty of whitewater kayaking which I love and can no longer do.

I was fortunate to have been able to take advantage of early retirement a couple years ago with my wife's blessing. If I wasn't sick I would never have retired because I love my trade and am very good at it. And my days now? Well, my wife works too much (but loves what she does), my oldest Daughter is either working or at college and will start teaching next year. My youngest Daughter is at college out of town and in 4 years will be a pharmacist. So my day is boring and lonely. But I have my dogs for company, 2 labs that are constant companions and play machines at the same time. Thankfully the weather is warming. We have a water front home so there will be no keeping the labs out of the river. So that's pretty much it for phase1 of my tale. I'll keep my fingers crossed and will be sure to provide phase 2 if possible

Linda's Story

2010-03-29T09:24:00.000-07:00

I was just diagnosed a year ago as 1a and I have not had a biopsy yet. I am 51 and I have had this virus now for over 30 years. Back when I was about 17 or so I lived the wild life and found myself in the hospital with a very bad case of hepatitis. Back then they called it serum hepatitis because that was the type of testing they did then. There was no hep c; just serum or infectious hep. Well I was in the hospital for about 6 weeks and was on the critical list for several weeks. I made it through and never thought about it much. Back then the only thing they told me was that I would most likely always have it in my blood and could not donate blood; but that’s all they knew then. They also told me that it was possible that I would have liver problems later. I contacted the virus from a bad tattoo that I still have today. There was a party with free tattoo’s and some whiskey and I indulged. Well as I said I never thought about it much and I went to my family doctor this past year with health problems. My liver function tests came back high so as a routine he tested me for hep c and that’s when I found out I had it. It also may be related to all or some of my other health problems and there are many. I have been living in pain for over 15 years now with my back and I have degenerative disk disease and two other forms of arthritis that affect the joints. I go to pain management and have been on pain meds now for 8 years; they help some but I still have a lot of pain. I have COPD, emphysema, osteoporosis and insomnia. They all may be related to this virus destroying my body for the past 30 years. I took treatment last year; the standard interferon and ribovarin, but after 6 months did not work. Now I am waiting for new meds. The doctor that treated me has done blood work and an ultra sound so I do not know how much liver damage I have but I have a lot of pain on my upper right side. I have terrible memory problems and I am so tired all the time but yet I can’t sleep much. When I asked about a biopsy he says well you are going to take treatment anyway so why do a biopsy. I feel like I am going down hill faster and faster and I don’t know what to do since the treatment would not work for me; so I just keep reading about everyone else’s problems and compare there’s to mine and I keep hoping the new meds will be my answer. I developed a few more problems with the treatment. I got psoriasis and my eyes bother me from time to time and the eye doctor I went to said it was a side effect from interferon. I get blast of color images that come on all of a sudden they are called retina migraines almost like looking in a kaleidoscope. My biggest problem is the pain from my disks and joints and being so tired. I hope now that this virus is out in the open now more people will find out they have it early so it does not destroy them like it did me. The only thing I can do now is tell more people about it and hope for better treatments in the future. I have 5 grandchildren and I would love to feel better so I can spend better time with them. I have 3 that live far away that I do not see because of my health and I would love to get better so I can go see them. Well I will keep reading and learning for now and I will help anyone that needs answers or just wants to talk. I have posted a few times on Janis and friends I enjoy that site in fact it is the only one I use. Thanks for listening and caring.

Karen's Personal Hep C Story

2010-03-26T15:48:00.000-07:00

I found out I had Hepatitis C 2 weeks after I got married. I was 29. I went to get a wisdom tooth extracted and while I was knocked out- the nurse pricked her finger and they tested my blood. I havent thought about that in a long long time ( I am 39 now) but looking back I have to say- WOW. I cannot believe that random finger #### happened. I probably would never have known!

I was not at all surprised about the Hep C. I was a teenage runaway and junkie. I started heroin at age 16 and stopped for good at age 20. I actually felt relieved about Hep C because it wasnt HIV- which my brother, whom I had shared drugs needles with, had contracted a few years earlier. So, I hung up the phone and called a friend and told her I was too confused and didnt know what Hep C was but could she please look it up online and call me back. It didnt really seem like a big deal to me. (compared to HIV anyway) I felt embarrassed that I just got married to a very stable and very normal man who did know I had done drugs when I was a teen but probably didn’t know that I used them intravenously. Nine years had gone by and I was a totally different person- someone that didnt seem like theyd lived the way I had. Now all of this shame was back up again.

I went to the liver Dr. in Virginia. He was the top guy in the Wash, DC area. I joined Delphi forums. I was told I was a 3a genotype and did a biopsy that showed like a 2.5 grade or something. I started treatment. I was a newlywed and a new stepmother to a 10 year old girl. I was afraid of feeling sick and I was afraid of the emotional side effects of the ribovarin. In my family- I have lost my father and grandmother and uncle to suicide. I was afraid that I would become like them. So- after about 2 months on treatment, I started to miss pills. When I was told I was clear at 12 weeks or so- I stopped the pills and just did the shots. I was too young (emotionally) and just didn't care enough about myself to do the treatment.

That was 10 years ago. Since then, a lot has changed. My marriage ended up not working out after 5 years. I left the DC area and came to Los Angeles. I went to a liver guy and they told me that the Hep C was back. That wasn't a surprise. So- technically I am called a "relapser" but I really only did about 12 or 15 weeks on treatment or so. I got ready to do the meds again a few years ago. I lived by myself and got really down about "what is the point of life?" For many of us women- we hit that age where you have to decide- kids or no kids? I had four miscarriages with my husband and knew that getting pregnant would be hard if even possible and on the day I was to start meds - I called the treatment off. I couldn't bear to lose two years of potential babymaking time because of toxic chemicals in my system. I had to at least TRY. If it was in the master plan for me to be a Mom- then I would try till I was 40 and see what happened.

And we all know what happened next. I got pregnant. My Dr was shocked. I didn't even believe it until there was an actual person flailing around in front of me. I had a few moments in the deliver room where all I could see was blood and I was horrified that my Hep C blood was all over this place. Thats how Hep C is... you always have a little tiny monkey on your back. Here was the most beautiful moment of my life- and Im wretching inside that my blood is going to get all over my friends and family.

So here we are now. I am 2 months away from turning 40. My son is 2 years and 3 months. I started treatment 12 weeks ago and I take every pill and shot as directed. I had a huge viral load and I may possibly end up doing a year on tx even though Im a 3a.

This is not easy. I work from home and have had to take more work on to pay for the 1000$ a month co-pay. My child is home with me and he isn't talking yet but sure likes to scream really loud. I live with my sons father, as co-parents. I didn't think it was fair that we should split custody of such a young child so we decided to live together and its worked out pretty well. I am lucky to have someone to help me with my son. The WORST part of treatment for me is feeling like I dont have energy to give this guy the childhood he deserves. Zoo, park, train museum, Disney- all of those things take energy. But I do it. I've let Hep C take enough of MY life already ..I don't need it butting in on my little boys life.

Its been a long ten years with this. One fourth of my life has been spent with this little C-shaped skeleton clanking around in my closet. I have no idea what I will feel like when the meds are done. I have no idea what normal even is. I sure do hope to find out though!!

Thanks guys for listening. It feels pretty good just to put this out there. :)

Connie's Hepatitis Story

2010-03-26T15:24:00.001-07:00

Hi, my name is Connie and I have been living with hep c since 1988. I have tried and failed treatment 3 different times. My dr. recommended I receive a liver transplant last July and actually rec'd one in Oct. 09.

Still fighting with the hep c and on my 4th round of treatment, hoping to at least slow this puppy down enough to wait for the cure. I know it's coming, hopefully in my lifetime!!!!!

I believe public awareness is key and should be started with education of the children; they need to know how important the liver is and just what its functions are. How they should avoid medications and alcohol as much as possible.

I also believe that blood test for hep c should be given at least by the age of 30 unless otherwise indicated; it should be part of your physical just like mammograms, colonoscopies, etc.

Hopefully with people like you to help bring this out we will be able to stop this disease. God bless and good luck. Connie

A Story of Courage - David's Story

2010-03-26T15:19:00.000-07:00

I really don’t know where to start here. Some of my journey has been a nightmare and other parts have been a blessing.

I guess I’ll start with my diagnosis of hepatitis c. Life history? I don’t think really matters so much except for the fact that I didn’t know disease’s such as aids or hepatitis existed. We’re young and do things. I lived with an out of the way crowd and I expect this is how I contracted hepatitis c. See, we were sitting around a table one night, drinking and decided we were going to tattoo each other, which we did. You have to realize, I’m now a 55 year old male and at the time I think I was maybe early 20’s First tattoo at 16. Anyway, 30 some years later…..I always worked hard to provide for my family and found myself getting seriously tired all the time, didn’t feel like eating and my concentration levels were wavering. Well, I had been throwing up in the mornings before work for months. Went to work, did my job, and things kept getting worse. Forgetting things, falling asleep at work at my desk (I never did that in my life). It got to the point where I couldn’t handle the throwing up every day. I was getting bloated, my stomach kept swelling. I would drive home on the highway for a distance of maybe 30 miles and started getting lost. A trip I’d done a million times. Something just wasn’t right. I think the big one for me was talking to my son one night in and I honestly couldn’t remember his name and I was jaundiced. My son and I talked all the time. How could I forget his name? Off to the doctors. I was sent for an endoscopy for the throwing up issue at first, (well I think my doc had other things on her mind also). After my procedure Mr. Doc comes out stating..”David” you’re a very sick boy…diagnosis..severe pylori infection and hepatitis c. I know enough about anatomy that I can say I was having liver pain but thought it was from beer…NOT…Gastroenterologist sent me to a hepatologist at the Cleveland Clinic where they did a multitude of tests. Long story short. My results came back with active hepatitis c and with the upper quadrant pain I was having they wanted to evict my gallbladder. I said do it and they did. At the same time they did a wedge biopsy of my liver which I’m glad for as it takes a bigger sample of the liver for Mr. Pathologist to look at. My results came back with genotype 1b with advanced cirrhosis and I need to start treatment as soon as possible. GREAT…..I seriously educated myself in a hurry about hepatitis c and the treatments. Oh Joy…Funny thing about all this is that I never got mad or really scared..Just..Let’s fix it. I also had cryoglobulinemia with my diagnosis which explained a lot about why my hands were freezing up outside in cooler weather an going back to normal when they warmed. God, this has been a while and I’m forgetting so much.

Starting Treatment:
Sticking needles in my stomach??? Okay, I did it and got used to it, I guess? First two months I had to have blood drawn every week because of the state my liver was in. Funny, Doctor told me to keep something close by me to drink all the time so I elected to drink pop…big, big mistake. It would have been nice if he had told me water. Anyway, I got sick…ended up with wooly cottonballs for my eyes…anemic . Depression? WOW……I’ve never had an issue with this in my life. Two months into treatment I was balling my eyes out barbecuing and I love to barbecue. Sleep? Forget it. It wasn’t happening. I was up for so many days and nights I was honestly hallucinating. My wife at the time told me I was having a conversation with my kid brother in the living room. She asked who I was talking to and I told her to go….herself. I don’t talk like that. Thing was, my brother I was conversing with in front of my face lives over 1000 miles away. Back to the doctors I go. There comes a time when you just have to realize you need help, no matter how stubborn you are. Had to see psychiatrist and gave me meds for depression..celexa, which I must say worked very well for me. I could cook again..yipppeee….my next issue was the sleeping. The doctors always said I was kind of a unique patient because they tried so many things on me that just didn’t work and were strong enough to knock out a horse. They tried everything, believe me. Toward the end I ended up taking 20mgs of ambien combined with 600mgs of neurontin just to get to sleep. That’s a lot of meds. Needless to say my life was, well I was, a walking or sitting zombie.

At this point I need to mention and feel this was a life saver for me. Doing my research on this disease, I came across support forums for people like myself so looked into it. I was an outdoor guy, knew nothing about computers let alone type? Got to be kidding me. My wife at the time was actually a good support system in the beginning and typed for me when I went into chat rooms at Janis and Friends. I am going to say this. If it wasn’t for Janis and Friends Hepatitis C support forum I would likely be taking a dirt nap now. Not a plug but a fact. God, this could be a long story.

Okay, I’m sleeping now, depression’s under control, now I become anemic. I dropped from a hemoglobin level of 17+ to below 10 in real short order. PROCRIT…another weekly injection. No big deal really because it kept me where I needed to be. Pegasys in my tummy and procrit in my thigh, for 44 weeks.

I know I’m leaving a lot out of this story as I have just forgotten. I used to have a journal but it left home. The whole emotional aspects of this disease and what it’s done to me personally? Hard for me (treatment story isn’t over yet) to really say. In a lot of ways I’m glad I got sick as it woke me up, changed me. Gave me the desire to help people, love and care. I wish I could convey to people what this has really done to me and for me. I use to care just about Dave. Now Dave doesn’t care about him but about the people he can help. Funny story here and I might as well share as I seem to be on a mission?. God, my Grandmother was from and always use to tell me (with my hand in hers) David…some day you’ll be of help to people and find who you are. I never believed this but find that I now want nothing more than to help people. Did having hepatitis c change me? OH YES!!!

I devote my time to helping people when I can. Cleveland Clinic had me do a television interview about hepatitis c hosted by Regis Philbins wife Joy. I’ve talked at schools yet I will never be able to do enough and now find I just don’t have the energy or funds to do so.

Back to my treatment journey…Half way through treatment my throat started acting up. I got hoarse and was at first diagnosed with oral thrush. Fixed that and it came back. Still was talking like a mafia dude after that was cured. Okay Dave, you have a cold. Six months into this nonsense they diagnosed me with cancer in my larynx. Fun never ends. Had surgery for this and never missed one shot of my interferon treatment. Someone had to be watching over me. I had also acquired hypothyroidism during this escapade. 56 weeks of interferon, diagnosed with genotype 1b with advanced cirrhosis I’m still alive and doing quite well. Yes, I have issues with ascities, other things, but…I do not have hepatitis c:-)

Another short story…Dang, I could go on all night. I had a gastro once that asked me to teach him about hepatitis c. He is now the head of diabetes for the clinic. He didn’t know enough about hep c? Please educate yourself about this disease and teach others. Doesn’t matter who they or you are. You can never stop learning.

How am I today???? I’m going to be truly honest here. I no longer have hepatits c but I didn’t listen to my body. Well, I guess I did and was just too naive or stubborn to deal with it. I now deal with issues like, insomnia ,have dealt with cancer again ..I live in chronic pain and there are a lot of nights I wish I could just go to sleep and never wake up again. Thing is…what I deal with now has nothing to do with my having hepatitis c, (well the emotional caring part does), or the treatment I took to rid myself of hepatitis c. I get comfort out of doing research about hepatitis and helping those that are so lost coming into this. I feel so bad and wish in my heart I could take everyone’s pain away.

I could add so much more to this but it’s already getting lengthy. More than welcome to email me at stepfinder@hotmail.com

David

My Story Steve Loprz

2010-03-25T11:52:00.000-07:00

My name is Steve and I have been aware of my sickness for around 14 years. The existing medication available, interferon, was not an option for me because of the genotype 1 I have and the medications side effect. Two years ago my Doctor said I had stage 4 cirrhosis and maybe a year or more to live, he also informed me that I couldn't get on a liver transplant list until my liver starts to fail. I am a self employed concrete contractor with a wife and two children still at home; ages 21 and 15. I do feel fine thank God but I'm waiting for that to change. I don't drink or smoke; the only thing I do drink is a drink called monavie. It helps me with the energy. Besides that, my faith in God and my hope in Christ is all that carries me. thank you

Coreen's Personal Story

2010-03-25T04:44:00.001-07:00

I was diagnosed in 2004 but had to go a year w/o drinking so in 2005 had a biopsy was diagnosed having 2b, Grade 2 Stage 4 with Fibrosis & Cirrhosis. Did the regular 24 wks in 05 with interferon/riba Undetectable than relapsed 1 month later. Waited till I retired in 06because my insurance plan wouldn't cover treatment again. Did 48 wks thru Roche free yahoo because of my piddly pension. Undetectable at end of treatment but relapsed again after 1 month!

Next I did maintenance peginterferon for 2 yrs & a bit have 1 shot left than I will patiently wait for the new drugs to hit Canada seems we are a tad behind the US in Hep C programs. I do hope that you can use my story even if I don't live in the US are you can make me an honorary US resident hmm!

I was very fortunate in the fact that the only side effects I had were extreme nausea & fatigue-which I still have- I take Zofran for the nausea & sleep a lot. I really wish/hope that the new drugs aren't as harsh as the old ones - thank goodness they weren't as bad as the very first ones that you had to mix & were so harsh on your body both physically & mentally.

So much more money should be allotted for this hideous disease that robs one of everything that is precious. Even after 2 treatments the lingering side effects are at times debilitating. I'm sure I don't have to tell you that.

I do hope this helps you somewhat & I also hope other's see the need to get their stories out in order to accomplish something that would benefit us all.

Take care Coreen

Thelma's Story

2010-03-24T18:13:00.001-07:00

Hi,

My name is Thelma.

I’m a 50 year old Hispanic woman living with Hep C. I contracted this disease about thirty years ago. It’s a possibility that I may have gotten it through an unsafe blood transfusion or intravenously – take your pick. All I know is that I have it.

Living with Hep C is very demanding for me. I have to constantly watch my diet and exercise. Knowing that I have this virus makes me determined to stay on top of it. I want to live. I stay informed through the group support. As I’m sitting here typing I must inform you that I’m stage two of this disease.

I’m a prime candidate for the treatment and I have accepted that approach with open mindedness and a positive attitude. I feel by doing the treatment it will prolong my life and I plan on living for a long time.

My motto is “it’s best to have done it than to wish I could have done it”.

Shalom

Loretta's Story

2010-03-24T17:09:00.000-07:00

I won’t be starting treatment for another month, but this is my story so far.

Was a heavy drinker for the last ten years. One day in May, 2009, I began vomiting blood heavily and ended up on a life flight to a larger hospital as I live in a small community. Was diagnosed with an ulcer and Hepatitis C. Came home and went on the wagon, and found a good Doctor.

I have had this virus for at least 20 – 30 years – I am 60 years old. Had a biopsy that showed cirrhosis with grade 3 inflammation-not good. Biopsy also showed a hereditary disorder called Hemochromatosis that also can cause cirrhosis. So my poor liver had a triple whammy with the drinking, Hep C and the Hemo. The treatment for the Hemochromatosis (your liver hangs on to too much iron) is phlebotomy which is old fashioned “blood letting”. I have been doing this weekly for three months, but it is working, so will start treatment next month. The extra iron would interfere with the treatment drugs. I will be on the weekly interferon shot and daily ribovarin pills for a year. My chances of “clearing” the virus are only 40 to 50%, but I have to go ahead because of the cirrhosis. I have no idea where I got this virus, but I have to just “deal” with it now the best I can. I have a lot of company as people in my age range are just discovering they have the virus.

MY HEP C STORY Pete S.

2010-03-24T09:46:00.000-07:00

It may sound strange, but Hepatitis C has turned out to be one of the best things that ever happened to me. As a person with a history of problems with drugs and alcohol, it finally got me to clean up my act. Moreover, both the disease and the treatment have made my life immeasurably richer than it might otherwise have been.

I believe I got Hep C from sharing intranasal drug paraphernalia (a means of transmission that is beginning to get more attention nowadays). I was diagnosed in 2005 after being evacuated from New Orleans due to Hurricane Katrina. Having been ill for a few days, I woke up one morning jaundiced and with other symptoms of acute liver disease. When I found out what it was, I was frightened, but determined to rise to the occasion: I quit drinking and drugs and started exploring my options. I did not have insurance and, when I got back to New Orleans, the public hospital there was not even able to give me a PCR test as their machine was under water. A doctor advised that immediate treatment was best since I had probably been infected recently, but I was in no position to do that under the circumstances.

I decided to move to New York. I was quite weak for months, but slowly improved and was able to start a new life. I got a job with health insurance. A biopsy in May 2007 that showed I was at Stage 2 in the progression of liver damage. My doctor advised treatment; I agreed but I wanted to enjoy the summer. I was scared, feeling like someone who was going off to war or to prison for a year. But I felt that it was the right thing to do at that time and that I had a stable set of circumstances for doing so: apartment, job and supportive network of family and friends.

I lived it up as best I could that summer, and in October ‘07 did my first injection. I was very sick for that first one, but less so for the second and third. I learned, mostly, to get used to it. Since I had genotype 1, I was in for the 48-week treatment. I was able to go to work for the entire duration of the treatment, only occasionally taking days off to rest. I went to a couple of different support groups that we have here in New York which I found very helpful.

Interferon therapy is one of the most difficult things I have ever done. I counted down the weeks and days till it would be over. Fortunately, my 4-week blood work showed my viral load to be undetectable, meaning I had an excellent chance of clearing the virus successfully. This helped keep me going through the long year. I had severe fatigue, appetite loss and weight loss (about 20 pounds). After about 7 weeks I got sufficiently anemic that my doctor put me on Procrit, which meant another weekly injection, which I hated. Still, I think the worst thing about treatment, for me, was the way it affected my mood and emotions. I would become extremely anxious and irritable to the point where I would find myself, for example, yelling at someone else in line at the grocery store.

When I had had enough of this sort of thing, I asked my doctor for help. He gave me an antidepressant, which helped a lot for a while but then problems returned. We doubled the dose, which helped, but these mood issues continued to bring me a lot of misery until a couple of months after finishing the treatment.

However, despite it all, I was able to finish, in September 2008. I was so happy those first days when I didn’t have to do any injections or take any pills, but the truth is that it took me some months to really get back to normal energy levels and feeling consistently good again. In all my follow-up labs I have continued to have an undetectable viral load.

Ever since then, well, life has really taken off to some remarkable places. I don’t want you to think I never laughed or had moments of joy while on treatment, but it was, overall, like traveling through a long dark tunnel. But it was worth it! Not only do I have a clean bill of health, I have had the immense satisfaction of facing my fear, doing what needed to be done and coming out the other side successful. I feel really good about myself, and my life is that much brighter for having gone through a dark time.

I’ve tried to remain available to help new HCV patients coming down the pike, and have done a bit of advocacy work, but mostly these days I am doing my best to live, live, live. I can’t believe how much energy I have! I didn’t ask for Hepatitis C but I believe in the old cliché about making lemonade when life deals you lemons. It has brought unexpected and wonderful rewards, and I wouldn’t have it any other way.

Daves' Story

2010-03-22T17:21:00.000-07:00

"I was diagnosed in the late 1990's and had a biopsy in 2003. I didn't get the results until 2008 as the specialist left the country right after my first biopsy. I was floated around the medical system with them telling me I had heart problems (not) that would make treatment difficult. I finally got into the Toronto liver clinic (excellent place) and they had accepted me in a clinical study starting pegintron/ribovarin in Oct 2008. The day I was to start they told me I had liver cancer and would be operated on in December. It was a successful radio frequency abolation but was informed no treatment until 6 months free of cancer. I could not go on the treatment until June 2009 and cannot participate in any clinical studies as I am now deemed cancerous. I was a fast responder then got very sick on the treatment and needed a hemoglobin transfusion (I was getting epo injections with my pegintron) during which I caught c-diff in the hospital. That ended the treatment and I have been getting stronger (9 months later) and maybe can redo the treatment in the fall. The treatment was worse than the virus and I still have some residual effects...dry eyes, abdominal pain, brain fog, etc but reganing lost muscle mass and some hair, not looking as yellow. I have recently experienced portal hypertension, a good sign that my liver is getting worse. I am not a transplant candidate as I still have 30% liver function.

My Personal Hepatitis C Story

2010-03-20T16:57:00.000-07:00

I live in South Florida between Miami and Ft. Lauderdale. Had been going to a primary care doctor and having annual physicals with all the blood work. It got so I was waiting 2 hours to see my primary care physician when my mom told me she had found a doctor she liked so I said why not and went to see him. He did my annual physical and when I went back for the results of the blood work he said “your liver enzymes are elevated and you have hepatitis c”. I guess if I had not changed primary care physicians I would have not found out until my liver failed! He referred me to a gastro and sent me home.
I went on the internet and started searching for what was hepatitis c and found all these horror stories of the treatment and the effects of the disease. I called my mom and my husband and said “I’m dying!”. My good old mom called the doctor’s office and screamed at him and said how could you send her home with no information?
The gastroenterologist I had been referred to could not see me for over a month and I was not waiting, I wanted answers now. I found another gastro and made an appointment. When I went into see her she stared with conversation like “the statistics are 50/50, you cannot eat shellfish and now you must go down and get a liver biopsy”. I left there in shock.
I had not cancelled my appointment with the gastro I was referred to and went to see him. What a difference in that appointment from the first gastro I went to see. He explained to me the treatment and said he was doing a study and he could provide my meds for free but that I would have to agree to let him follow me for 5 years. He said I needed a liver biopsy to see where my liver was and some blood tests to see my viral load and how my liver was functioning at this point. I said oh no, I’m not letting you do a liver biopsy. Well, he walked out of the room and said well I won’t treat you. I went running down the hall after him going wait wait LOL
I did all the tests and had the liver biopsy. I’m phobic with needles and blood and made myself a wreck before that liver biopsy. That was the worst part of my liver biopsy, me making myself a wreck. They gave me something before hand to settle my nerves and I did get a punch in the shoulder feeling but besides the fact that I had to lay on my side for hours in boredom it was a pretty uneventful procedure.
The result of those tests was that my liver was grade 3/stage 2 - half way to cirrhosis. Blood work revealed that I was genotype 1A, alt and ast was in the high 50s and my viral load was 1 million. I decided I was going to try and kill this virus if I could; figured if I could not take the treatment I would stop but I was going to at least try.
My doctor’s study nurse brought me to the office and showed me how to mix up the pegalated interferon alpha 2B, it came in 2 bottles with 2 syringes. She demonstrated on an orange and handed me a video and a card with the steps. I also was to take 5 ribavarin daily. That was that.
I got home, wiped off the counter with alcohol and couldn’t get the cap off the syringe, jabbed it into my thumb and was bleeding all over the place before I even started. I found a forum I had been going into for support and went online and they talked me through the process. Don’t know what I would have done without those people!
After the shot I took some alleve and went to bed. The next day I had a slight fever and felt pretty wiped out and just slept most of the day.
I did complete all 48 weeks of shots and continued working except the last 6 weeks where I had to take a leave because I became very anemic. First 6 months was not so bad as I did my shot late Friday night and was off the weekends so I rested. After the first 6 months my blood counts just plummeted. The doctor did start me on procrit to raise my counts but it did not do much I was so far gone and almost done with the 48 weeks. Towards the end of treatment I did not do much except lay on the couch. I did clear the virus at 12 weeks.
I was diagnosed the end of 2001 and started treatment in early 2002 and finished Friday, December 13th, 2002….I have been clear ever since.
Treatment was not a walk in the park, it was hard not just for me but for my whole family. I was depressed, lost a lot of my hair and was miserable most of the time, but it was doable. I kept telling myself that it was not forever, it was just a year…I told myself this over and over again LOL
I ran a Delphi support forum for about 5 years but have since stopped that. Figured I had given back what I had gotten and wanted to move on and start living again. I also participated actively in the March on DC for about 4 years, which was a wonderful event and great to meet others going through the same thing. I have organized several Hep C Festivals here in South Florida and in the middle of Florida.
I continue to support others one on one or by email. I also spread the word by telling people I have this disease and that everybody should be tested. I had no clue about this disease when I was diagnosed, knowledge is power. The best part of helping a newly diagnosed person is letting them know that it is ok, nothing to be ashamed of and they will be shocked to know how many actually have this disease…if they just ask or mention they have it. More die with HCV than of it.

Terrie's Story

2010-03-19T15:33:00.000-07:00

I'm a 48 year old woman, living in the mountains of N.W. Montana. I was diagnosed in April '06 after a routine annual exam. My liver enzymes were elevated so we tested for Hepatitis. I had just had a friend who had passed due to years of fighting the virus only 6 months prior, so I was already aware of HCV. My best friend and her husband had also tested positive for HCV, but she was unable to be genotyped and shows no viral load, so she must have spontaneously cleared.
Anyway, I digress. When I was diagnosed, it wiped me out. I was vocal with my friends about the virus and found I had other friends who had undergone treatment and there was one who had been diagnosed a few months prior to me and was undergoing treatment. Cancer had taken hold of him and treatment had been unsuccessful. I saw him when he was jaundiced and fighting accites which rocked me to my core and scared me more than anything. He subsequently passed about 1 month after I saw him. Another devastating blow.
I was surprised by how many people had it, but no one talked about it. The stigma is so strong, even when the public knowledge is minimal. People are so afraid of being judged for having an illness that may have been contracted by drug use, even if it was only one time or done years ago.
Back to me, I was genotyped as 4. That was another surprise since it is so rare in the U.S. I had used IV drugs in the 70s and had dabbled in snorting drugs into the early 80s. Along with the drug use was a sexually permissiveness that could have been a means of contracting it, but those didn't feel right.
I had been hit by a car in 1963, the day before my 2nd birthday and had massive internal injuries including a ruptured liver, which led to large blood transfusions.
Upon researching genotype 4 populations in this country I found there just happens to be one of the two main populations in Minnesota where my accident occurred. So, I'm pretty sure that's where I contracted this. Genotype 4 is slower progressing, but is treated here the same as 1a. It tends to be resistant to treatment. The research regarding genotype 4 is occurring in Egypt, where it is the prevalent genotype. (I have never been to Egypt or known anyone who has been there.)
I was on chronic pain management at the time I was diagnosed for back pain, taking opioids and muscle relaxers. My first GI wanted me to begin treatment right away, but I had a problem with the way he treated me as a person, so I sought another doctor. I found another one who thought I was doing quite well. If my accident had been my means of transmission, my body has fought this all of my life and faired pretty well. He informed me that if I did want to do treatment that it tended to be unsuccessful when opioids were used as pain meds. I weaned myself from my pain med addiction and am now free of them. That doctor turned out to not meet my expectations and now I'm on my third. I refuse to be marginalized or treated as less than worthy of the best care. I'm so fortunate to have a supportive husband and son along with adequate health insurance to cover my expenses.
I started reading as much as I could about HCV and various types of treatment. Having two friends pass due to this virus even after conventional treatment scared me, so I have opted for the time being to use herbal therapy.
I seem to be doing well on herbal therapy, at least as far as I can tell. My liver panels have all been in the normal range since I began and my viral load tests have all come back lower each year. The second year, it had dropped by half, to just under 2 million. I'm getting my yearly viral load test done again on Friday, which is always anxiety inducing. I just keep hoping this is still working for me. I'll be ready for my second biopsy next year unless this test indicates I need it sooner.
This has been a blessing in disguise. I have cleaned up my diet, quit drinking, smoking and taking pain meds. I exercise regularly and am attempting to lose the weight I've allowed to build up over the years, especially what I've gained since I quit smoking. I have gardened for years and eaten organically as much as possible. Since we live so rurally, I do all the cooking so I don't deal with fast food or restaurants much. We're fortunate to live in an amazingly healthy environment.
One of the things that bother me most is the thought that I have passed this virus on to other without ever knowing it. I realize it was not intentional, however if there was adequate public awareness of this then fewer people would inadvertently be infected. I was terrified I had passed this to my son at birth (I had a Cesarean Section and the presence of blood to a new born is a huge risk) He tested negative, thank God. My husband has not been tested, but that's his choice. We treat all blood spills, even what most people would think as nothing, as biohazard. Can't be too careful.
I am a member of Debbullan, Inc. Board of Directors and take every opportunity I can to spread information about this virus. I speak openly to everyone about my having it and how I may have gotten it. If I'm stigmatized by this, it's out of ignorance, and I aim to combat that. I’m a substitute teacher for a small Jr. High/ High school and most of the kids, a student body of about 300, know that I have HCV and how it's transmitted. With so much piercing and tattooing among today's youth they need to be informed.
So, there's my story thus far. I hope this is helpful to others. I'm always happy to answer questions about HCV, my experience with it, how I'm treating it, and coping.

Daryl's Story

2010-03-16T13:09:00.000-07:00

I would like to begin my story with a salute to all of those people that have helped me, and others. Diagnosed with HCV, it has never mattered to me how someone was infected. I know people that used drugs and shared needles, as well as people that have received the virus through tainted blood transfusions, and none of it matters to me. What matters most is that people with HCV need help, and that help takes many forms. I am fortunate enough not to have the severe financial burden that many with this disease face. I can’t imagine what it must feel like to face HCV without medical options as well as any semblance of a support system, which I believe is so very important. I am deeply discouraged by the stigma that we all face when we are diagnosed with HCV.

I never knew many things about this disease until I was diagnosed. I began a journey toward understanding and knowledge, and ultimately ridding my body of this terrible virus. The journey actually began when I was hospitalized two years ago with extreme abdominal pain. After three days in the hospital, and many scans and tests later, all that they came up with was that I needed to have a hernia repair. They asked several times “why was I there”. I am otherwise a healthy person, with the exception of having asthma that is treated successfully.

In the next several months I underwent many tests that included colonoscopy, gastroscopy, many blood tests, a CT scan, and finally while being pre-screened for the hernia repair it was discovered that my iron levels were high. This finally led my primary care doctor to check for hepatitis with more blood work. The preliminary screen showed that I might have the virus. The second blood test confirmed that I did have HepC. That was in July 2009.

I was devastated by this news. The next couple of months were very difficult for me. In my mind my life was over. I am 55 years old, with so much I want to do in my life, and now I am going to die. That went through my mind over and over. As I began to research the virus, it didn’t get much better, because it seemed like it was all bad news. I was obsessed with it, and I couldn’t get it off my mind.

The next step was to see a Hepatologist. More blood work was ordered to determine my genotype, etc. It came back as genotype 1b, and I was told that it was the most resistant to treatment. It was just more bad news. It seemed like that was the only news I was going to get. The next step was a liver biopsy in early December 2009. That produced some good news about my liver. I was happy to learn that I was stage 0-1, which means that there is little damage to my liver from the disease. I was so happy to finally hear something positive, and it was a great relief for my wife and family. The next step was to plan for treatment. I was asked if I would be interested in participating in a drug trial along with standard treatment. The Hepatologist gave me three options actually. The first was to do nothing, the second was standard treatment, and the third was with the drug trial. I decided that I would go into the trial because the drug had shown a substantial increased chance of clearing the virus, and reaching SVR. Since deciding to be a part of the trial I have undergone many screening tests to determine if I am suitable. The only thing they found during screening was that I have a condition called optic nerve drusen.

I am scheduled to start treatment in a few days, and as far as I know I have been accepted to participate. As I begin the next stage of my journey, I have a sense of relief mixed with anxiety about how the drugs affect me. I want to continue to work as much as I can, and keep my life as real as possible. I want to continue to be myself, and not be defined by this disease. Something that is very important to me is that there be more awareness and education about HCV so that people will get tested, get treated, and get better, without all of the added burden of stigma, isolation, and financial hardship.

Update on Daryl's Treatment Journey
Update of my story as of April 18, 2010
Day 31 of treatment for HCV, genotype 1a
Clinical Trial with new drug and SOC

I started treatment March 19th. It was a little scary, but I had long since made up my mind to treat. Determined I was. Because I am in a clinical trial, the first shot was done at the Institute where I am being treated, and that made it a little easier. I had no side effects until on the third day. It started with itchiness not unfamiliar to me, and progressed to the point that night where I felt the side effects that are often called flu-like. Worse flu I ever had.

For the next week and a half I had all kinds of strange things going on all over my body. I had severe shivers, and periods not long after taking the Copegus, where I felt extremely hyper. Another strange sensation was that everything smelled toxic, including me. I joked with my wife that I was a walking toxic waste dump. I use humor to deal with adversity, sometimes it works for me. Because of the smells, I could not, did not, want to eat. I lost 8 pounds in 9 days. I used ensure, drank lots of water and Gatorade, and by the second week my sense of smell started to return. I have since gotten my appetite back somewhat, and stopped the weight loss. Since then I have had an easier time with the treatment than I had in those first couple of weeks. I am not saying it was easy, and it still is not easy. I have months of treatment ahead. I have had some severe pain from an old injury, and we had to sort that out with the right meeds.That was not easy, and in fact was quite unpleasant. I have also had bouts of crying and incidents of rage, but I have wrestled with that fairly well so far.

My short term memory is very bad, and I hope it returns after treatment stops.
Having said all that, it has been generally tolerable so far. I do get some relief now and again from feeling sick and extremely tired. Some of the time I even feel better than I did before treatment started. I had suffered with symptoms from Chronic HCV for a while before diagnosis and treatment started.

One thing that has made it all much easier for me is the warmth and friendship I have found in a community of people at Janis and Friends. Betty has become a dear friend, and an inspiration to me. These people have saved my life. My wife has been solid as a rock behind me all the way in this journey; I could not have managed without her love and kindness. There are others, including my treatment nurse, the doctors, and on and on…there have been many. I am blessed for that. I also know how lucky I have been, and never lose sight of the reality that many are not so lucky in dealing with HCV. This saddens me.

At my two week tests, my viral load had dropped by 2.85 logs. It had come down from over 5 million to 7000 in two weeks. Given my genotype, this is apparently very good news by all accounts. This information was magic to me. I am convinced that I am getting the new drugs in the trial, not the placebo. I am in touch with others in the same trial that have experienced similar results. Not all have, unfortunately.

I want to say that there is hope for the future with new treatments. With any luck, some of these drugs are near approval for use with the current the SOC treatment.

We have a long road ahead, and I know it will not be an easy time. We need to raise awareness, educate, and bring the resources needed, to the people with this awful disease. The stigma and ignorance will be present for some time to come I am afraid. But if we talk about it, and keep a dialogue going, the narrative will change in time. It is my dream that some day we will be able to look back on our hard-fought battles with pride and dignity. And HCV will be a thing of the past. I hope that the politicians and decision-makers hear our message loud and clear.

We all need to help each other. We all deserve, as human beings, to have a chance to have good health. This is a basic human right in my opinion. I hope that I am successful in spreading hope to those in this community, and beyond, to include the families and friends of those infected.
Although it seems like there is no hope at times, and Oh- how I know how that feels. There is hope, and I believe it strongly.

I must..............

Lisa's Story

2010-03-15T16:58:00.000-07:00

Hi all. My name is Lisa. I am a white 52-year-old female genotype 1b grade 1 stage 0. I was diagnosed about 7 years ago and almost lost it. I couldn't believe it. My gastro said wait for a better treatment to come out since my biopsy revealed little damage. For several years I had symptoms of hep c exhibiting as rollout. it was very painful, interfered with work and personal life, and no Dr. knew what I had. I was misdiagnosed for 2 years, got fed up, and diagnosed myself with the help of the Internet. That kick started my treatment Sept. 11 2009. Good Lord, talk about being hit by a train!!!! I consider myself a tough cookie and have been through a lot of trauma in my life. but I was not at all prepared for the fatigue, malaise, pain, nausea, loss of appetite, etc. etc. that followed. I was already on anti-depressants when I started treatment and thought that was sufficient. Two months of crying and suicidal thoughts took me back to my Dr. who prescribed extra anti-depressants. they saved my life. truly.

It's been the battle of a lifetime. As bad as my two divorces, but isolating. I was thinking about it today....a friend I know broke her fingers and required surgery. She is able to talk about it to anyone and share and they can see and understand her pain. Our pain is hidden. No one sees it or can feel it. they don't understand the brain fog, the digestive problems, persistent fatigue, insomnia, etc., and we are really isolated. Personally I don't talk about it to anyone for fear of being judged. I am single and that has a lot to do with it. I protect myself from whatever makes me unhappy or scared and people just plain don't understand hep c or the debilitating effects of the treatment like they do chemo.

I started to feel better around week 10. The first 10 weeks all I could do was work and sleep. I had to sleep 12 hours a day and on my days off I would sleep 16 hours or more. I went over to my mom's house for dinner because I was too tired to cook or shop. Thank goodness I got better, but very gradually. I work at it like crazy. I read uplifting things, try to do things that make me happy, don't do anything outside of work that requires energy I don't have. sometimes I get tired of not having a life, but then I try to remember that this treatment is working for me and how blessed I am that it does. there are so many hep c folks that treatment doesn't work for. I don't read depressing articles about hep c even though everyone says you should be informed. I am informed more about nutrition and exercise and what I can do to make my body healthy. I try to put my energy into things I have control over and not worry about what I don't or can't control.

This is not to say it's a cakewalk now. I've been so tired this past month I haven't performed well at work and I have too many days where I just have a complete breakdown--physically, emotionally, spiritually--you name it. Then I have to rebuild. I let myself cry if I need it, but not too long. I see a therapist. I get a massage. I hug dogs. I remember that one day I will live again and actually have a life. That will be amazing. I try to be grateful for what I have.

The journey isn't just an assault on your body. your spirit, your soul, your thoughts, your brain--they all change as well. It is such a cataclysmic shift it's hard to adjust.

I have become a kinder, more compassionate person through this. I have learned to forgive myself. I have learned to set limits and say 'no.' I have learned that life isn't perfect or fair and that's just the way it is. I have learned every person with hep c is different and what works for me won't necessarily work for you. Find your path. I even write down what works for me because my brain forgets stuff all the time.

Slough off the stuff that doesn't matter. I finally stopped shaving my legs because I don't have the energy and who the hell will see anyway? I let go of being perfect and desirable all the time. My skin is like a snake's and I am pretty pale. When I get tired, really tired, I just cannot function. I must go to bed. take care of myself.

I have one good friend I bitch to a little, but everyone has their limits. mostly there is no one who wants to hear every freakin' detail of what aggravates you and the downfalls of the treatment, so I write poems about how I feel and that helps. I try not to abuse my friends and family with complaints. it isn't their job to carry me and they won't anyway, they can't. it's my journey.

well, I have certainly rambled a lot here. if this helps just one person, I feel the treatment will have all been worth it. I found a great friend on Janis & Friends who was so compassionate he made me cry. the websites are invaluable. Great resources and always someone to listen.

My Hepatitis C Story

2010-03-15T16:23:00.000-07:00

I am a 55 year old female. I had recently moved and went to get hooked up with a new family doctor. As part of his blood panel he ordered liver enzymes and mine were elevated. ALT was in the 90's. 6 months later he checked again and they were still elevated even more. ALT at 190. HE did the screening test for Hep C and I had it. I have never had any symptoms.

It was of course quite a shock.

I was diagnosed 2/10. Biopsied 3/10- stage 0 to 1, grade 3 . I had been a frequent wine drinker. My doctor thinks I have been infected for a long time but had little progression.

I began treatment 5/10 at a local teaching hospital with a hepatology department.

Before deciding to treat, I had all the concerns everyone has. Will the meds do lasting damage? How bad will the side effects be? Can I still work?
I made it a point to learn all I could. I researched based on my personal odds of clearing the virus and decided to treat now as I have great medical coverage and want to retire soon.

I am genotype 3a so I treated for 6 months. Used Pegasus and RIbiviran 1000 mg ( at my request as this was weight based and the research I have read indicated this would give me the best odds to clear the virus)

I had minimal side effects during treatment. Anemia and fatigue were the most notable. Procrit was used to deal with the anemia. I did not takes any meds for anxiety or depression. I never experienced any of the psychological issues associated with the treatment meds. Most other side effects were annoyances. I just didn't like that the meds made me feel edgy and hyper. I missed only 2 days of work in the 6 months.

So far my treatment appears to be successful. During treatment the virus was undetectable at week 4 so I had rapid viral response and it has remain undetected. I was still clear on my 3 month post treatment tests.

I would do it again if I had to.

A soul search in the mountains

2010-03-14T13:13:00.000-07:00

Forget all the what-abouts, the medical field has left me having to be a human lab rat. Loving all animals, now I know what my four legged brother and sisters go through. Ha!
Being raised a teenager in the late 1960's and early 1970's by a totally dysfunctional step-father and mother who were either always in Europe with my step-sister or telling me to go to my room or outside, put my young mind in motion to the acceptance of always being alone, never having attention from the woman who's womb I climbed out of and building my self-confidence, standards and morals on actions I thought, at that time, to be good. At 16 years old my parents took me to court and had me emancipated because they got tired of me running away from home and not knowing how to live a family life. Sleeping in gas station bathrooms, the woods and under bridge over-passes did not assist my growth as a young woman, so yes, I grabbed a hold of what ever lifestyle and whom ever would put a roof over my head and food in my mouth and at the least, pretend they cared about me. After many surgeries which lead to a full hysterectomy, a few tasteful tattoos and walking down the same path as many of the 1969 Woodstock, NY goers, I am now nearly 53, sick with the flue nearly every day and just sitting back waiting for my next pancreas and/or gallbladder flare up which will send me to the hospital where patients with out funds are treated by students and like lab rats.
The only things I've learned to understand and forgive in my search for the "how I got HepC" answer and my this trip back in time, is forgiveness to myself for things I've done in the past that were questionable and the fact that my mother was raised in the great depression, she was left with my grandfather and her younger sister when she was ten as they carried her mother to a hospital for 25 years from hearing and seeing things.
2010 the medical field says, is still saying, you can get HepC from A,B,C, D or E. Considering I had cysts removed from my ovaries at 17 years old and the Doc could have had HepC and pricked his finger during surgery putting his infected blood in me, you-tell-me.
October 2004 is when I was tested for HepC. While dating a fellow who needed a blood transfusion after an auto accident in the 1970's and contracted HepC through the blood the hospital put through his veins, his Doctor suggested I be tested for HepC. The suggestion for testing was not advised due to the mere 2% risk of contracting HepC through sex, but from the fact that 1/3 of the world is running around with HepC and do not know it. I believe they aren't aware of it NOT because it doesn't manifest itself but because the medical field HAS NOT cautioned the public to be aware of and pay attention to the very obvious signs/illness brought out by HepC i.e. abdominal pain, fatigue, monthly and possibly daily flue like sickness' and the break down of organs located around the liver due to the liver not functioning properly from HepC, to name a few, and last but not least the mental anguish and dysfunction many of us allow ourselves to go through carrying the burden of knowing we have a virus which can be transmitted to others and knowing there is no cure, we will die from HepC destroying our other organs and/or liver.
My HepC story? The aforementioned is my HepC story.

walk in peace
brenda in the appalacia's of Virginia
tsalagi
tsadanadogi alisgisgi