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.
Sunday, July 18, 2010
Saturday, July 3, 2010
Janet’s Story.....................
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.
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..............................
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.
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
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
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
Sunday, June 13, 2010
Stevie Hunter's Hepatitis C Story
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.
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.
Monday, May 10, 2010
HEP C ~ FINDING THE SILVER LINING
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
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
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 www.archbooks.com
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
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
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
Saturday, May 8, 2010
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.
Beth
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
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.
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.
Groups work to help homeless vets
Half of these Vets were labeled as vulnerable because of health problems ranging from Hepatitis C to emphysema.
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 lorren@hepcchallenge.org
WHD is on May 19th so please get them sent to Lorren today :-)
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
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
Friday, April 30, 2010
An Interview with Hope and Dennis
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.
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
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
(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.
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
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
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
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
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
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
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
Thursday, April 29, 2010
It’s my life ...Denise
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
Thanks for listening
Hope, Pain, Sorrow.....Poem By Margie (A true Gift)
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
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
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
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
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
Thank You
Curtis Hadlick
Wednesday, April 28, 2010
Be grateful for every day.....ADRIENNE’S JOURNEY
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.
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.
Monday, April 26, 2010
"This blood may contain hepatitis or other viruses" and it did............
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.
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.
Subscribe to:
Posts (Atom)