The Battle Between Fear and Freedom
When I was diagnosed HIV+ in 1990, my only thought was, "What do I need to do to stay alive?" The first and foremost thing I had to do was to free myself from my use of illegal drugs. That wasn't easy for a person like myself who had been a substance user/abuser for most of my adult life. But I was able to move from every day, all day drug use to sobriety by way of a harm reduction technique -- a methadone program.
Life was like new for me after joining the program. I began to see myself as alive and truly involved in life. I was able to keep up with my bills and still have some money to spend. I found myself setting goals, paying more attention to my eating habits (no longer living off of Little Debbie's cakes and 25¢ water juices), and even playing paddle ball again. Everything seemed to be going great.
I even put at the back of my mind an arrest that I hadn't answered up to. There's an old saying: "If you play with fire, you must pay the price." And pay I did. A knock on the door in May 1995 forced me back to reality. It was the warrant squad coming to get me. I felt as though my world just collapsed. Little did I know that this incarceration would enlighten me to a condition that I might not have known about until it was too late.
I was diagnosed with hepatitis C while I was in a correctional facility in upstate New York. I thought to myself, "My God, HIV and hepatitis C -- what does all this mean?" I didn't have a clue and I was scared to death. I had picked up a brochure in the medical office about the hepatitis B vaccine, so I asked the doctor about it. He told me that there were different hepatitises and there was nothing that he could give me for my hepatitis C. He said that I should just eat right and do some exercise. So that's what I tried to do for the remainder of my stay.
Being incarcerated at the age of 51 took quite a toll on me. I didn't think that I was going to make it home alive. But I did -- and alive I want to stay. I could hardly wait to see an outside doctor and learn about my co-infection. Upon my release, I found a good doctor and established a working relationship with him. Monitoring my liver enzymes was a top priority, along with tracking my HIV viral load and CD4 counts. Sometimes my liver enzymes were a little high, but not high enough for me to even think about hepatitis C treatment. Things seemed to be going rather well, and I was feeling good once again.
After awhile I found myself very busy, volunteering and being active in my community. I began to miss medical appointments. I was neglecting myself.
For some of us it always seems to take a jolt back to reality to make us move forward. This time it was my good friend Juan, whose hepatitis C had progressed to end stage liver disease. As if it were yesterday, I remember the words he spoke to me when he knew that the end was near. "Please don't do like I did and not pay attention to your liver. Please go to the doctor and find out where you're at before it's too late." Six weeks later he died. On top of the incredible sense of loss I felt, I was scared to death.
So now I monitor my liver enzymes on a regular basis, every two or three months. Sometimes they're up a little and sometimes they're not.
With so much talk about HIV medications and liver failure, I'm in a constant battle with myself -- should I or should I not take my HIV meds? Sometimes I don't know which way to go.
At the age of 62, my CD4 count has hovered below 200 ever since I had a bout with hepatitis A in 1997. (Why wasn't I ever offered the hepatitis A vaccine?) But my HIV viral load is undetectable, so I waver between taking the meds and not taking them.
To add insult to injury, I recently had my gall bladder removed, and the surgeon who did my operation had a chance to take a close look at my liver. He informed me that my liver is very badly damaged. So I've made an appointment with a liver specialist to get more information and talk about my options. It's time for me to take more control. I'm tired of being scared to death.
Joan Warner is the health educator at Osborne Association in the Bronx and a member of ACRIA's Community Advisory Board.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.