Patient Spotlight: Jacqueline Kurkowski

Meet Jacqueline Kurkowski, a patient and active volunteer with the American Liver Foundation, New England Division. Jackie has agreed to share her story of living with Hepatitis C, in our patient spotlight.

“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. All of that changed just before my twentieth birthday when routine blood tests revealed liver enzymes that were ten times their normal range, which came as a huge shock since I lived a generally healthy life. After the initial shock, my doctor ran a battery of tests that confirmed a diagnosis of Hep C. At a time when most my age were enjoying college, starting their lives and careers, etc., I was going to be fighting to kill a virus that was not only difficult to treat, but potentially life threatening. I was initially shocked but also optimistic – I hoped that the virus had been mitigated by my otherwise good habits. Unfortunately this was not the case, as my initial biopsy revealed stage 3 liver damage and genotype 1A; which I learned was the most difficult to treat strain. 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 back in 1982 – basically I had been carrying the virus my whole life. I quickly began the 48 week standard of care treatment of interferon and ribavirin, which I hoped would clear things up so I could get on with life. Little did I know that this virus would dominate my early and mid-20s.

I started dosing and realized the side effects were horrible; aches and pains throughout my body to go along with a general lack of energy. After 48 weeks of this, the treatment was considered to be unsuccessful and I learned about my future as a “null responder”. I entered the world of clinical trials and began a double dose of interferon as a part of another 48 week protocol. At the end, I was devastated to find out it too was a failure. This was the low point. 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. For a while, I stopped going to the doctor. 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. 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. I found this treatment also hurt my memory and mental clarity a bit, and was let go from my job. Despite all of these obstacles, I reached the end of treatment, went for my final blood draw, and after two of the longest weeks of my life I finally received news that I was virus free. Today, I am happy to report that I am still virus free. My husband and I adopted our son in 2010 and things are looking up.

I first learned of the American Liver Foundation in 2006 when doing some online research about new antivirals. I read about the annual walk and immediately felt this was something I had to get involved with. My husband and I first walked in 2006 and began to attend other events which really helped answer questions about liver disease and also served as a reminder that there were others going through the same struggles as me or, in several cases, something far worse. Through programs such the annual Liver Life Walk and Run for Research, the American Liver Foundation is working to raise funds so that more patients can write stories of success like mine. However, the American Liver Foundation is not just about raising money for a cure. It is about raising awareness. This awareness can be as simple as letting people know what the liver does and how to keep it healthy or something more complex, such as tips for navigating treatment and finding the latest clinical trials. As a member and patient representative, I am proud to be a part of this organization and hope that you too will consider finding a way to be a part of our cause.”

If you are interested in sharing your story of living with liver disease in our next patient spotlight, please contact Elizabeth Stemporzewski, Patient Services Manager, at estemporzewski@liverfoundation.org.

Page updated: December 18th, 2012