Boston Marathon 2017 American Liver Foundation

JACQUELINE'S STORY
Growing up, I never would have imagined sitting down to write about my experience with Hepatitis C. My childhood was relatively normal; I enjoyed good health, an active lifestyle, and athletics such as swimming and soccer. There was one aspect of my life that made me somewhat unique – my mother was undergoing treatment for Hodgkin’s disease while she was pregnant with me. Given the fact that my mom received chemo and several blood transfusions during her pregnancy, doctors were curious how I would develop and fair both as an adult and child. Up until age 19, my health was spectacularly unremarkable which was a relief to me and a pleasant surprise to the doctors who followed my progress.

All of that changed just before my twentieth birthday when routine blood tests revealed liver enzymes that were ten times their normal range. I didn’t drink or use drugs, so this came as a sudden shock to me. After a battery of tests and trips to the doctor, my diagnosis was confirmed to be Hep C. This news was a huge blow to me. At a time when most my age were enjoying college, starting their life and careers, hanging out with friends etc., I was going to be fighting to kill a virus that was not only difficult to treat but potentially life threatening. After the initial shock, the next step was to assess the level of damage that the virus had caused my liver and what strain of the virus (genotype) I was infected with. The biopsy was the scariest of the tests, as doctors used as large needle to extract a tiny portion of my liver. As unpleasant as the test was, finding out I had stage 3 fibrosis might have been worse. This stage meant I was one step from cirrhosis and needed to begin treatment as soon as possible. Given the level of damage to my liver, the doctors determined that the virus was most likely due to a contaminated transfusion my mother received while pregnant. Since she passed away in 1984, so there was no way to know if she was chronically infected as well. My doctor also informed me that my genotype was 1A, a common yet hard to treat strain, and my baseline viral load was high at about 8 million.

At this point, I tried to make an conscious decision to learn about the virus and treatment from my doctor instead of reading about it online. Articles on the internet are informative, but can also paint a very morbid picture of the virus, the treatment, and prognosis. Still, this did not alleviate my fears of not having a normal life or life expectancy. When it was time to begin treatment I did not know what to expect. I went home from the doctor with my medicines (pegylated interferon injections for once weekly dosing and Ribavirin pills for daily dosing) and took my first pills and shots. The next day I felt awful, aches and pains throughout my body to go along with a general lack of energy. The side effects subsided over the next few days, but once Friday rolled around and I took another shot it was back to more of the same. After about 4 to 5 weeks of this, I decided to get myself together. I resumed going out and doing my normal weekend activities and found that this was the best way to beat the side effects and distract myself. The weeks were generally OK and I was able to go to school and work part time (against my doctor’s preference). Despite my resiliency, I was disheartened to find out that after 12 weeks of treatment I had failed to obtain EVR (early virological response, meaning there was still virus showing in my blood). After 48 weeks, the treatment was considered to be unsuccessful and I learned about my future as a “null responder” (someone who does not response to interferon).

After three months of being off of interferon, my doctor had me try a 48 week “null responder” clinical study that used a double dose of interferon for the first 12 weeks in an effort to achieve EVR. I went back to the rotten side effects, but did my best to stay active and continue with my life. At 12 weeks I was showing a signs of progress - my viral load was decreasing and my liver functions were normalizing. I thought this was is it. I thought I could forget about fearing a liver transplant or losing to this disease. I continued the treatment through the 48 weeks only to find disappointment again. I failed to respond.

This was the low point. At the time, there were no other drugs available to treat me. I began to feel like I would not live long and that I would one day have to go through the pain of waiting for a transplant. I didn’t feel I could take another year of treatment only to have it end in more disappointment. I was scared and frustrated. For a while, I stopped going to the doctor. I continued to work, but I spent more money than I should have since I now had a feeling of living for the moment and “why bother planning for the future if I don’t have one?” I started to think I would never be a mom, a wife, or anything I had aspired to.

Eventually I got back on the road to treatment. I heard about new direct acting antivirals moving into clinical trials for null responders and decided to give it a go. The road back was not easy. First I was now dating my future husband and the idea of 48 weeks of physical and emotional pain was not too appealing. Second, I was generally feeling OK which was going to be tough to willingly give up while on another treatment. Finally, my doctor was mad that I was trying to get into a trial at a hospital that was outside her preferred network. She did everything possible to prevent me from getting into the new study as she told me I had too many out of network referrals and the insurance company would not be allowing it. This delay caused me to miss the deadline for getting into more trials. After a fair amount of encouragement from my family and future husband, I got in to see a new doctor and waited for a trial to open up.

In the spring of 2007 I learned of a trial for a new drug called telaprevir that targeted the mechanism that the virus used to multiply. The idea of adding another drug to the interferon and ribavirin combo was a little less than appealing, but it gave me hope for the future. I enrolled in the study which was “double blinded”, meaning both myself and the doctors did not know whether I was receiving real telaprevir or placebo. This type of design was stressful because I didn’t know how I was doing or whether the effort was worth it. Still, I took my pills religiously and my shots weekly. A continued this treatment right through my wedding and honeymoon, even though I was losing weight and not feeling my best. I found this treatment also hurt my memory and mental clarity a bit, and my job at Northeast Health (a hospital company nonetheless) was less the accommodating. Not only was I fired, but they also tried to block my unemployment which also added the stress of a legal battle (which I won, thankfully)!

Despite all of these obstacles, I reached the end of treatment. My final blood draw was taken and I waited for the result for 2 weeks. Finally, after two weeks I opened my email account and saw an email from the clinician. The subject line was “CONGRATULATIONS!” I knew right then my life was back on track. It was a defining moment that made everything worth it.

Today, thanks to the research efforts of doctors and other scientists as well their supporters like the American Liver Foundation, I am happy to report I am Hep C free. In 2010 my husband and I adopted our son and life is looking up! I am eternally grateful to organizations like the ALF who raise awareness for this and other liver diseases. Knowing that you are not alone is sometimes all a person needs. There are no words that will express my gratitude to everyone who helped me along the way and to those who I have never met yet have saved my liver and my life.