When I arrived at my doctor's appointment in March, I was greeted with some great news: my CD4 count was going up and my viral load was undetectable. The bad news was mentioning starting hepatitis C treatment, which stopped me in my tracks. The fear of starting this treatment consumed me. As a treatment educator at AIDS Survival Project, I know this can be a challenge -- both emotionally and physically. After feeling good for so long, the thought of "getting sick to get better" is a hard pill to swallow in addition to a weekly injection.
When I returned to ASP, still processing this new information, the regrets of my past lifestyle stayed in my head. After being an intravenous drug user (IVDU) for 26 years, I'm grateful to say I'm coming up on eight years clean! Among HIV-infected people, 30% are coinfected with hepatitis C (HCV). In those infected with HIV by IVDU, the rate of coinfection increases to 60-90%, totaling about 300,000 coinfected people in the U.S. Before I go any further, it is suggested that all HIV-infected persons be screened for HCV. HCV and concurrent HIV infection may quicken the progression of HCV. Liver damage rarely gets better unless something is done to stop or slow the progression.
The following are some of the things that can be done:
As I refocused on my "to do" list on my desk, my first priority was to complete a curriculum I was writing on "Knowing Your Treatment Options" as it applies to HIV therapy.
Some of the things I had listed are:
We have a saying in recovery: "Keep it simple." In a moment of clarity (which doesn't come to me often), I realized I could utilize this list as I prepared myself for HCV therapy. This is where the term "self-management" comes into play. Self-management means just what it sounds like -- teaching people to manage their own health and to make informed choices, taking charge of their own destiny.
The treatment I will be doing is Pegasys interferon, which is injected under the skin once a week in combination with Ribavirin, which is taken orally three times weekly. Although I'm ready physically for HCV treatment, I'm not completely ready emotionally. Knowing the list of side effects does not help. They include flu-like symptoms, depression, possible anemia, a low platelet count and injection site reactions. A large percentage of coinfected people are African American and studies find that more than 90% of them have genotype 1. There are six known varieties of HCV, called genotypes. People with genotype 1 have a lower rate of response to HCV therapy. I have genotype 1. Additionally, people with a history of drug use may have issues with depression, which sounds like me. Seven years ago, I made a decision to do whatever was necessary to stay healthy and fit. Having said that, I'm ready to begin this treatment.
One of my objectives is to decrease the viral load of HCV to below detection. The second is to normalize my liver enzyme levels, improving the condition of my liver. However, my main objective is to enjoy my life and my children one day at a time.
My doctor and I are a team and we will always be so because we make decisions together. My support system includes my family, my colleagues and my doctor, as well as the people in my recovery network -- especially my fiancée, Gwen, and our dog China.
My colleague, Sarah Biel-Cunningham, has written an article about HCV in this issue of Survival News. She discusses the medical and technical side of HCV. Very seldom do we as staff writers do personal articles, but I was encouraged to do so with the support of the staff. I plan to report back in about six months. I hope this will allow our readers to catch a glimpse of my experience with this treatment. As we say in recovery, "I hope this helps somebody, because it helped me." My fear has turned to faith. Keep safe!