Thursday, March 25, 2010
My Story Steve Loprz
My name is Steve and I have been aware of my sickness for around 14 years. The existing medication available, interferon, was not an option for me because of the genotype 1 I have and the medications side effect. Two years ago my Doctor said I had stage 4 cirrhosis and maybe a year or more to live, he also informed me that I couldn't get on a liver transplant list until my liver starts to fail. I am a self employed concrete contractor with a wife and two children still at home; ages 21 and 15. I do feel fine thank God but I'm waiting for that to change. I don't drink or smoke; the only thing I do drink is a drink called monavie. It helps me with the energy. Besides that, my faith in God and my hope in Christ is all that carries me. thank you
Coreen's Personal Story
I was diagnosed in 2004 but had to go a year w/o drinking so in 2005 had a biopsy was diagnosed having 2b, Grade 2 Stage 4 with Fibrosis & Cirrhosis. Did the regular 24 wks in 05 with interferon/riba Undetectable than relapsed 1 month later. Waited till I retired in 06because my insurance plan wouldn't cover treatment again. Did 48 wks thru Roche free yahoo because of my piddly pension. Undetectable at end of treatment but relapsed again after 1 month!
Next I did maintenance peginterferon for 2 yrs & a bit have 1 shot left than I will patiently wait for the new drugs to hit Canada seems we are a tad behind the US in Hep C programs. I do hope that you can use my story even if I don't live in the US are you can make me an honorary US resident hmm!
I was very fortunate in the fact that the only side effects I had were extreme nausea & fatigue-which I still have- I take Zofran for the nausea & sleep a lot. I really wish/hope that the new drugs aren't as harsh as the old ones - thank goodness they weren't as bad as the very first ones that you had to mix & were so harsh on your body both physically & mentally.
So much more money should be allotted for this hideous disease that robs one of everything that is precious. Even after 2 treatments the lingering side effects are at times debilitating. I'm sure I don't have to tell you that.
I do hope this helps you somewhat & I also hope other's see the need to get their stories out in order to accomplish something that would benefit us all.
Take care Coreen
Next I did maintenance peginterferon for 2 yrs & a bit have 1 shot left than I will patiently wait for the new drugs to hit Canada seems we are a tad behind the US in Hep C programs. I do hope that you can use my story even if I don't live in the US are you can make me an honorary US resident hmm!
I was very fortunate in the fact that the only side effects I had were extreme nausea & fatigue-which I still have- I take Zofran for the nausea & sleep a lot. I really wish/hope that the new drugs aren't as harsh as the old ones - thank goodness they weren't as bad as the very first ones that you had to mix & were so harsh on your body both physically & mentally.
So much more money should be allotted for this hideous disease that robs one of everything that is precious. Even after 2 treatments the lingering side effects are at times debilitating. I'm sure I don't have to tell you that.
I do hope this helps you somewhat & I also hope other's see the need to get their stories out in order to accomplish something that would benefit us all.
Take care Coreen
Wednesday, March 24, 2010
Thelma's Story
Hi,
My name is Thelma.
I’m a 50 year old Hispanic woman living with Hep C. I contracted this disease about thirty years ago. It’s a possibility that I may have gotten it through an unsafe blood transfusion or intravenously – take your pick. All I know is that I have it.
Living with Hep C is very demanding for me. I have to constantly watch my diet and exercise. Knowing that I have this virus makes me determined to stay on top of it. I want to live. I stay informed through the group support. As I’m sitting here typing I must inform you that I’m stage two of this disease.
I’m a prime candidate for the treatment and I have accepted that approach with open mindedness and a positive attitude. I feel by doing the treatment it will prolong my life and I plan on living for a long time.
My motto is “it’s best to have done it than to wish I could have done it”.
Shalom
My name is Thelma.
I’m a 50 year old Hispanic woman living with Hep C. I contracted this disease about thirty years ago. It’s a possibility that I may have gotten it through an unsafe blood transfusion or intravenously – take your pick. All I know is that I have it.
Living with Hep C is very demanding for me. I have to constantly watch my diet and exercise. Knowing that I have this virus makes me determined to stay on top of it. I want to live. I stay informed through the group support. As I’m sitting here typing I must inform you that I’m stage two of this disease.
I’m a prime candidate for the treatment and I have accepted that approach with open mindedness and a positive attitude. I feel by doing the treatment it will prolong my life and I plan on living for a long time.
My motto is “it’s best to have done it than to wish I could have done it”.
Shalom
Loretta's Story
I won’t be starting treatment for another month, but this is my story so far.
Was a heavy drinker for the last ten years. One day in May, 2009, I began vomiting blood heavily and ended up on a life flight to a larger hospital as I live in a small community. Was diagnosed with an ulcer and Hepatitis C. Came home and went on the wagon, and found a good Doctor.
I have had this virus for at least 20 – 30 years – I am 60 years old. Had a biopsy that showed cirrhosis with grade 3 inflammation-not good. Biopsy also showed a hereditary disorder called Hemochromatosis that also can cause cirrhosis. So my poor liver had a triple whammy with the drinking, Hep C and the Hemo. The treatment for the Hemochromatosis (your liver hangs on to too much iron) is phlebotomy which is old fashioned “blood letting”. I have been doing this weekly for three months, but it is working, so will start treatment next month. The extra iron would interfere with the treatment drugs. I will be on the weekly interferon shot and daily ribovarin pills for a year. My chances of “clearing” the virus are only 40 to 50%, but I have to go ahead because of the cirrhosis. I have no idea where I got this virus, but I have to just “deal” with it now the best I can. I have a lot of company as people in my age range are just discovering they have the virus.
Was a heavy drinker for the last ten years. One day in May, 2009, I began vomiting blood heavily and ended up on a life flight to a larger hospital as I live in a small community. Was diagnosed with an ulcer and Hepatitis C. Came home and went on the wagon, and found a good Doctor.
I have had this virus for at least 20 – 30 years – I am 60 years old. Had a biopsy that showed cirrhosis with grade 3 inflammation-not good. Biopsy also showed a hereditary disorder called Hemochromatosis that also can cause cirrhosis. So my poor liver had a triple whammy with the drinking, Hep C and the Hemo. The treatment for the Hemochromatosis (your liver hangs on to too much iron) is phlebotomy which is old fashioned “blood letting”. I have been doing this weekly for three months, but it is working, so will start treatment next month. The extra iron would interfere with the treatment drugs. I will be on the weekly interferon shot and daily ribovarin pills for a year. My chances of “clearing” the virus are only 40 to 50%, but I have to go ahead because of the cirrhosis. I have no idea where I got this virus, but I have to just “deal” with it now the best I can. I have a lot of company as people in my age range are just discovering they have the virus.
MY HEP C STORY Pete S.
It may sound strange, but Hepatitis C has turned out to be one of the best things that ever happened to me. As a person with a history of problems with drugs and alcohol, it finally got me to clean up my act. Moreover, both the disease and the treatment have made my life immeasurably richer than it might otherwise have been.
I believe I got Hep C from sharing intranasal drug paraphernalia (a means of transmission that is beginning to get more attention nowadays). I was diagnosed in 2005 after being evacuated from New Orleans due to Hurricane Katrina. Having been ill for a few days, I woke up one morning jaundiced and with other symptoms of acute liver disease. When I found out what it was, I was frightened, but determined to rise to the occasion: I quit drinking and drugs and started exploring my options. I did not have insurance and, when I got back to New Orleans, the public hospital there was not even able to give me a PCR test as their machine was under water. A doctor advised that immediate treatment was best since I had probably been infected recently, but I was in no position to do that under the circumstances.
I decided to move to New York. I was quite weak for months, but slowly improved and was able to start a new life. I got a job with health insurance. A biopsy in May 2007 that showed I was at Stage 2 in the progression of liver damage. My doctor advised treatment; I agreed but I wanted to enjoy the summer. I was scared, feeling like someone who was going off to war or to prison for a year. But I felt that it was the right thing to do at that time and that I had a stable set of circumstances for doing so: apartment, job and supportive network of family and friends.
I lived it up as best I could that summer, and in October ‘07 did my first injection. I was very sick for that first one, but less so for the second and third. I learned, mostly, to get used to it. Since I had genotype 1, I was in for the 48-week treatment. I was able to go to work for the entire duration of the treatment, only occasionally taking days off to rest. I went to a couple of different support groups that we have here in New York which I found very helpful.
Interferon therapy is one of the most difficult things I have ever done. I counted down the weeks and days till it would be over. Fortunately, my 4-week blood work showed my viral load to be undetectable, meaning I had an excellent chance of clearing the virus successfully. This helped keep me going through the long year. I had severe fatigue, appetite loss and weight loss (about 20 pounds). After about 7 weeks I got sufficiently anemic that my doctor put me on Procrit, which meant another weekly injection, which I hated. Still, I think the worst thing about treatment, for me, was the way it affected my mood and emotions. I would become extremely anxious and irritable to the point where I would find myself, for example, yelling at someone else in line at the grocery store.
When I had had enough of this sort of thing, I asked my doctor for help. He gave me an antidepressant, which helped a lot for a while but then problems returned. We doubled the dose, which helped, but these mood issues continued to bring me a lot of misery until a couple of months after finishing the treatment.
However, despite it all, I was able to finish, in September 2008. I was so happy those first days when I didn’t have to do any injections or take any pills, but the truth is that it took me some months to really get back to normal energy levels and feeling consistently good again. In all my follow-up labs I have continued to have an undetectable viral load.
Ever since then, well, life has really taken off to some remarkable places. I don’t want you to think I never laughed or had moments of joy while on treatment, but it was, overall, like traveling through a long dark tunnel. But it was worth it! Not only do I have a clean bill of health, I have had the immense satisfaction of facing my fear, doing what needed to be done and coming out the other side successful. I feel really good about myself, and my life is that much brighter for having gone through a dark time.
I’ve tried to remain available to help new HCV patients coming down the pike, and have done a bit of advocacy work, but mostly these days I am doing my best to live, live, live. I can’t believe how much energy I have! I didn’t ask for Hepatitis C but I believe in the old cliché about making lemonade when life deals you lemons. It has brought unexpected and wonderful rewards, and I wouldn’t have it any other way.
I believe I got Hep C from sharing intranasal drug paraphernalia (a means of transmission that is beginning to get more attention nowadays). I was diagnosed in 2005 after being evacuated from New Orleans due to Hurricane Katrina. Having been ill for a few days, I woke up one morning jaundiced and with other symptoms of acute liver disease. When I found out what it was, I was frightened, but determined to rise to the occasion: I quit drinking and drugs and started exploring my options. I did not have insurance and, when I got back to New Orleans, the public hospital there was not even able to give me a PCR test as their machine was under water. A doctor advised that immediate treatment was best since I had probably been infected recently, but I was in no position to do that under the circumstances.
I decided to move to New York. I was quite weak for months, but slowly improved and was able to start a new life. I got a job with health insurance. A biopsy in May 2007 that showed I was at Stage 2 in the progression of liver damage. My doctor advised treatment; I agreed but I wanted to enjoy the summer. I was scared, feeling like someone who was going off to war or to prison for a year. But I felt that it was the right thing to do at that time and that I had a stable set of circumstances for doing so: apartment, job and supportive network of family and friends.
I lived it up as best I could that summer, and in October ‘07 did my first injection. I was very sick for that first one, but less so for the second and third. I learned, mostly, to get used to it. Since I had genotype 1, I was in for the 48-week treatment. I was able to go to work for the entire duration of the treatment, only occasionally taking days off to rest. I went to a couple of different support groups that we have here in New York which I found very helpful.
Interferon therapy is one of the most difficult things I have ever done. I counted down the weeks and days till it would be over. Fortunately, my 4-week blood work showed my viral load to be undetectable, meaning I had an excellent chance of clearing the virus successfully. This helped keep me going through the long year. I had severe fatigue, appetite loss and weight loss (about 20 pounds). After about 7 weeks I got sufficiently anemic that my doctor put me on Procrit, which meant another weekly injection, which I hated. Still, I think the worst thing about treatment, for me, was the way it affected my mood and emotions. I would become extremely anxious and irritable to the point where I would find myself, for example, yelling at someone else in line at the grocery store.
When I had had enough of this sort of thing, I asked my doctor for help. He gave me an antidepressant, which helped a lot for a while but then problems returned. We doubled the dose, which helped, but these mood issues continued to bring me a lot of misery until a couple of months after finishing the treatment.
However, despite it all, I was able to finish, in September 2008. I was so happy those first days when I didn’t have to do any injections or take any pills, but the truth is that it took me some months to really get back to normal energy levels and feeling consistently good again. In all my follow-up labs I have continued to have an undetectable viral load.
Ever since then, well, life has really taken off to some remarkable places. I don’t want you to think I never laughed or had moments of joy while on treatment, but it was, overall, like traveling through a long dark tunnel. But it was worth it! Not only do I have a clean bill of health, I have had the immense satisfaction of facing my fear, doing what needed to be done and coming out the other side successful. I feel really good about myself, and my life is that much brighter for having gone through a dark time.
I’ve tried to remain available to help new HCV patients coming down the pike, and have done a bit of advocacy work, but mostly these days I am doing my best to live, live, live. I can’t believe how much energy I have! I didn’t ask for Hepatitis C but I believe in the old cliché about making lemonade when life deals you lemons. It has brought unexpected and wonderful rewards, and I wouldn’t have it any other way.
Monday, March 22, 2010
Daves' Story
"I was diagnosed in the late 1990's and had a biopsy in 2003. I didn't get the results until 2008 as the specialist left the country right after my first biopsy. I was floated around the medical system with them telling me I had heart problems (not) that would make treatment difficult. I finally got into the Toronto liver clinic (excellent place) and they had accepted me in a clinical study starting pegintron/ribovarin in Oct 2008. The day I was to start they told me I had liver cancer and would be operated on in December. It was a successful radio frequency abolation but was informed no treatment until 6 months free of cancer. I could not go on the treatment until June 2009 and cannot participate in any clinical studies as I am now deemed cancerous. I was a fast responder then got very sick on the treatment and needed a hemoglobin transfusion (I was getting epo injections with my pegintron) during which I caught c-diff in the hospital. That ended the treatment and I have been getting stronger (9 months later) and maybe can redo the treatment in the fall. The treatment was worse than the virus and I still have some residual effects...dry eyes, abdominal pain, brain fog, etc but reganing lost muscle mass and some hair, not looking as yellow. I have recently experienced portal hypertension, a good sign that my liver is getting worse. I am not a transplant candidate as I still have 30% liver function.
Saturday, March 20, 2010
My Personal Hepatitis C Story
I live in South Florida between Miami and Ft. Lauderdale. Had been going to a primary care doctor and having annual physicals with all the blood work. It got so I was waiting 2 hours to see my primary care physician when my mom told me she had found a doctor she liked so I said why not and went to see him. He did my annual physical and when I went back for the results of the blood work he said “your liver enzymes are elevated and you have hepatitis c”. I guess if I had not changed primary care physicians I would have not found out until my liver failed! He referred me to a gastro and sent me home.
I went on the internet and started searching for what was hepatitis c and found all these horror stories of the treatment and the effects of the disease. I called my mom and my husband and said “I’m dying!”. My good old mom called the doctor’s office and screamed at him and said how could you send her home with no information?
The gastroenterologist I had been referred to could not see me for over a month and I was not waiting, I wanted answers now. I found another gastro and made an appointment. When I went into see her she stared with conversation like “the statistics are 50/50, you cannot eat shellfish and now you must go down and get a liver biopsy”. I left there in shock.
I had not cancelled my appointment with the gastro I was referred to and went to see him. What a difference in that appointment from the first gastro I went to see. He explained to me the treatment and said he was doing a study and he could provide my meds for free but that I would have to agree to let him follow me for 5 years. He said I needed a liver biopsy to see where my liver was and some blood tests to see my viral load and how my liver was functioning at this point. I said oh no, I’m not letting you do a liver biopsy. Well, he walked out of the room and said well I won’t treat you. I went running down the hall after him going wait wait LOL
I did all the tests and had the liver biopsy. I’m phobic with needles and blood and made myself a wreck before that liver biopsy. That was the worst part of my liver biopsy, me making myself a wreck. They gave me something before hand to settle my nerves and I did get a punch in the shoulder feeling but besides the fact that I had to lay on my side for hours in boredom it was a pretty uneventful procedure.
The result of those tests was that my liver was grade 3/stage 2 - half way to cirrhosis. Blood work revealed that I was genotype 1A, alt and ast was in the high 50s and my viral load was 1 million. I decided I was going to try and kill this virus if I could; figured if I could not take the treatment I would stop but I was going to at least try.
My doctor’s study nurse brought me to the office and showed me how to mix up the pegalated interferon alpha 2B, it came in 2 bottles with 2 syringes. She demonstrated on an orange and handed me a video and a card with the steps. I also was to take 5 ribavarin daily. That was that.
I got home, wiped off the counter with alcohol and couldn’t get the cap off the syringe, jabbed it into my thumb and was bleeding all over the place before I even started. I found a forum I had been going into for support and went online and they talked me through the process. Don’t know what I would have done without those people!
After the shot I took some alleve and went to bed. The next day I had a slight fever and felt pretty wiped out and just slept most of the day.
I did complete all 48 weeks of shots and continued working except the last 6 weeks where I had to take a leave because I became very anemic. First 6 months was not so bad as I did my shot late Friday night and was off the weekends so I rested. After the first 6 months my blood counts just plummeted. The doctor did start me on procrit to raise my counts but it did not do much I was so far gone and almost done with the 48 weeks. Towards the end of treatment I did not do much except lay on the couch. I did clear the virus at 12 weeks.
I was diagnosed the end of 2001 and started treatment in early 2002 and finished Friday, December 13th, 2002….I have been clear ever since.
Treatment was not a walk in the park, it was hard not just for me but for my whole family. I was depressed, lost a lot of my hair and was miserable most of the time, but it was doable. I kept telling myself that it was not forever, it was just a year…I told myself this over and over again LOL
I ran a Delphi support forum for about 5 years but have since stopped that. Figured I had given back what I had gotten and wanted to move on and start living again. I also participated actively in the March on DC for about 4 years, which was a wonderful event and great to meet others going through the same thing. I have organized several Hep C Festivals here in South Florida and in the middle of Florida.
I continue to support others one on one or by email. I also spread the word by telling people I have this disease and that everybody should be tested. I had no clue about this disease when I was diagnosed, knowledge is power. The best part of helping a newly diagnosed person is letting them know that it is ok, nothing to be ashamed of and they will be shocked to know how many actually have this disease…if they just ask or mention they have it. More die with HCV than of it.
I went on the internet and started searching for what was hepatitis c and found all these horror stories of the treatment and the effects of the disease. I called my mom and my husband and said “I’m dying!”. My good old mom called the doctor’s office and screamed at him and said how could you send her home with no information?
The gastroenterologist I had been referred to could not see me for over a month and I was not waiting, I wanted answers now. I found another gastro and made an appointment. When I went into see her she stared with conversation like “the statistics are 50/50, you cannot eat shellfish and now you must go down and get a liver biopsy”. I left there in shock.
I had not cancelled my appointment with the gastro I was referred to and went to see him. What a difference in that appointment from the first gastro I went to see. He explained to me the treatment and said he was doing a study and he could provide my meds for free but that I would have to agree to let him follow me for 5 years. He said I needed a liver biopsy to see where my liver was and some blood tests to see my viral load and how my liver was functioning at this point. I said oh no, I’m not letting you do a liver biopsy. Well, he walked out of the room and said well I won’t treat you. I went running down the hall after him going wait wait LOL
I did all the tests and had the liver biopsy. I’m phobic with needles and blood and made myself a wreck before that liver biopsy. That was the worst part of my liver biopsy, me making myself a wreck. They gave me something before hand to settle my nerves and I did get a punch in the shoulder feeling but besides the fact that I had to lay on my side for hours in boredom it was a pretty uneventful procedure.
The result of those tests was that my liver was grade 3/stage 2 - half way to cirrhosis. Blood work revealed that I was genotype 1A, alt and ast was in the high 50s and my viral load was 1 million. I decided I was going to try and kill this virus if I could; figured if I could not take the treatment I would stop but I was going to at least try.
My doctor’s study nurse brought me to the office and showed me how to mix up the pegalated interferon alpha 2B, it came in 2 bottles with 2 syringes. She demonstrated on an orange and handed me a video and a card with the steps. I also was to take 5 ribavarin daily. That was that.
I got home, wiped off the counter with alcohol and couldn’t get the cap off the syringe, jabbed it into my thumb and was bleeding all over the place before I even started. I found a forum I had been going into for support and went online and they talked me through the process. Don’t know what I would have done without those people!
After the shot I took some alleve and went to bed. The next day I had a slight fever and felt pretty wiped out and just slept most of the day.
I did complete all 48 weeks of shots and continued working except the last 6 weeks where I had to take a leave because I became very anemic. First 6 months was not so bad as I did my shot late Friday night and was off the weekends so I rested. After the first 6 months my blood counts just plummeted. The doctor did start me on procrit to raise my counts but it did not do much I was so far gone and almost done with the 48 weeks. Towards the end of treatment I did not do much except lay on the couch. I did clear the virus at 12 weeks.
I was diagnosed the end of 2001 and started treatment in early 2002 and finished Friday, December 13th, 2002….I have been clear ever since.
Treatment was not a walk in the park, it was hard not just for me but for my whole family. I was depressed, lost a lot of my hair and was miserable most of the time, but it was doable. I kept telling myself that it was not forever, it was just a year…I told myself this over and over again LOL
I ran a Delphi support forum for about 5 years but have since stopped that. Figured I had given back what I had gotten and wanted to move on and start living again. I also participated actively in the March on DC for about 4 years, which was a wonderful event and great to meet others going through the same thing. I have organized several Hep C Festivals here in South Florida and in the middle of Florida.
I continue to support others one on one or by email. I also spread the word by telling people I have this disease and that everybody should be tested. I had no clue about this disease when I was diagnosed, knowledge is power. The best part of helping a newly diagnosed person is letting them know that it is ok, nothing to be ashamed of and they will be shocked to know how many actually have this disease…if they just ask or mention they have it. More die with HCV than of it.
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