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My Hepatitis C Story

by: Shari Koppel

My name is Shari Koppel and I am a registered nurse in NYC. I am now 32 years old and this is my story. March, 2002 was when I first got sick. On a Sunday, I had gone out to dinner with my mother. Later that night, I first felt the nausea. Monday and Tuesday I still felt nauseous and Tuesday night I had profuse vomiting and diarrhea. I had actually vomited the food I ate Sunday night as if I had never digested it. My urine looked dark, but being a nurse and my boyfriend at the time also being a nurse, we thought I was dehydrated and my urine was just concentrated. The week before I had just started a new job and on Thursday one of my new co-workers told me my eyes looked yellow. I then knew right away that something was wrong and my urine wasn't concentrated, it was spilling bilirubin. I went to the ER where I also worked that night and my liver enzymes were through the roof!!! My ALT was 1600 (normal is 40) and my AST was 600 (normal is 25). The doctors admitted me and performed a Hepatitis Profile blood test. Since I had first felt sick after dining out, we were convinced I had Hepatitis A. Imagine our surprise when the Hep A result came back negative. I was in the hospital for 5 days. Throughout my hospital stay, I proceeded to get just about all of the symptoms of hepatitis. I was completely jaundiced, my urine was brown, my stool was clay colored, I had continuous bouts with nausea. My liver enzymes went up as high as 2500 and 900. They released me from the hospital once they started to come down and my symptoms decreased but without the complete results of the hepatitis blood tests. Three days later, the Hepatitis C result came back positive. Now, although I am an emergency room nurse, I had never had a needle stick and therefore couldn't imagine how I could have contracted Hep C. A few weeks before I had gotten sick I had oral surgery and this is one theory I have. However, I had the oral surgeon investigated by the Department of Health and there weren't any violations found. I still don't know how I got Hep C.

After my diagnosis I decided to go to the liver center at Mt. Sinai in Manhattan. They did further blood tests. My Hep C antibody test was positive but the viral load was negative. My doctor explained that in some cases when someone is acutely infected with Hep C their bodies own immune system fights it off. However, about a month later, I felt nauseous again and when we checked my liver enzymes, they were elevated again. Still, there was no viral load to be found. My blood work showed I had the active virus but no viral load to be counted. Therefore, my doctor saw no reason to put me on treatment. This continued to happen every 6-9 weeks. Every time we were convinced that my body was fighting off the virus on its own, my liver enzymes would go back up and I would immediately become symptomatic. Still, there was no viral load. Finally, in November, my doctor decided that maybe what I actually had was autoimmune hepatitis. He put me on immunosuppressant medication. Sure enough, with my immune system suppressed, I now had a very high active viral load of Hep C. We decided I could finally be treated. Since the holidays were coming up, I postponed treatment until January, 2003. The first week in January I started on Pegintron and Rebetol combination therapy.

Although I am a nurse, I was not fond of self-injection. I was fortunate enough to have a nurse for a boyfriend and he gave me my injections. Receiving the injections was rough and just knowing each week that I was going to be sick and out of commission for at least 24 hours was difficult. I became depressed and very lethargic. Blood tests showed I was severely anemic. I now had another medication added to my regimen. My doctor put me on Procrit, another weekly injection. It was very depressing to be so young (only 30 years old) and on all this medication. After 3 months of therapy, my boyfriend couldn't understand my feelings and left me. So, in addition to dealing with this awful illness and its awful treatment, I now had to deal with a devastating break-up, too. I am so very grateful to my most wonderful friends who wouldn't let me quit. Yes, I had to be put on anti-depressants also. But, being a nurse, I was open to any of my doctor's suggestions in how to feel better. I was very lucky in some ways too. My weekly reaction to the Pegintron could have been worse. Yes, I had body aches and fatigue. Each week, I ran a low-grade temperature. One week I ran a very high fever but this was the only week that I had to miss my therapy. I withstood 48 weeks of therapy. It was very difficult and I still get really angry at how this experience has changed my life. But, I am happy to note that my 6-month post-treatment blood test was negative. There are no signs of the virus. And I have been completely asymptamatic. I still get scared that the virus is going to come back. Next week I will be getting another blood test just to be sure. I have been putting it off for a while but I know I have to check. My doctor doesn't think I have anything to worry about but I need to check for my own peace of mind. And I think the worry will live with me for the rest of my life.

Page updated: April 10th, 2007