Monday, May 10, 2010


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.


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

Sunday, May 9, 2010

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

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

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

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

Friday, May 7, 2010

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

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.


Wednesday, May 5, 2010

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

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

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

Monday, May 3, 2010

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

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

Saturday, May 1, 2010

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

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