Perhaps the metaphor that life is a journey is overused, but it best describes my experience of living with hepatitis C. My journey took me from illness to nursing school, to working with hepatitis patients, and to writing two books.
In 1988, I was infected with hepatitis C as a result of a blood transfusion. The blood saved my life, and hepatitis C changed my life. Living with a potentially life threatening virus was an invitation to live better, and to make healthier choices, an invitation I gladly accepted. It was better than the alternative.
Soon after contracting hepatitis C, I went to nursing school. Serendipity led me to work in the hepatitis field, and in 1998, I was hired by Stanford Medical Center to work with patients who have liver disease. Simultaneously, I began writing for the Hepatitis C Support Project (www.hcvadvocate.org) and speaking about hepatitis C across North America. In short, hepatitis C has occupied my body and life for a very long time.
I’ve gone through three hepatitis C treatments. The first was in 1997. Back then, the treatment had a low success rate, but I was hopelessly optimistic. It didn’t work. In 2003, I tried it again, taking a combination of drugs for 48 weeks. I relapsed after treatment ended.
The third treatment occurred this year when I participated in a twelve-week clinical trial using two experimental drugs plus a traditional one. I can’t tell you that I am cured, since I won’t know the official results until Thanksgiving. However, I can tell you that I am 98% likely to be cured. Since I am an optimist, 98% sounds nearly certain to me.
Hepatitis C binds me to others, and walking through treatment with patients is a deep privilege. This connection inspired me to write two books. The first, Freedom from Hepatitis C, provides information about the disease, giving consumers and their caregivers what they need to decide if treatment is right for them, along with tools to help them navigate a successful treatment journey.
My latest book, Hepatitis C Treatment One Step at a Time, is the book closest to my heart, or should I say liver? I’ve wanted to write this type of book for fifteen years. Between my professional experience and personal ones, I have accumulated many tools to help patients have better hepatitis C treatment experiences. Even if I cloned myself, there is no way I could share what I know with everyone, so I put it all in my book. When I sat down to write it, I imagined my patients were in the room, and together we were sorting out their treatment. My goal was to be a virtual nurse.
After reading Hepatitis C Treatment One Step at a Time, a hepatitis C advocate wrote, “You have managed to create the experience of being there and holding someone’s hand through treatment. There isn’t anything like this out there.” Her words told me I succeeded. Hepatitis C Treatment One Step at a Time is as close as I can get to patients who live in far off places. It is a tool to help people to stay on treatment and know that they are not alone.
Just like life, treatment is a journey. Perhaps there isn’t a guidebook for life, but if you excuse my shameless self-promotion, I believe that Hepatitis C Treatment One Step at a Time is a guide for those who undertaking hepatitis C treatment journeys.
Wishing you safe, healthy travels,