Personal Perspective: The Whys and Hows of Me and Treatment
My name is Donald and I'm an addict.
I can say that today only because I'm in recovery after years of use and abuse. I managed to experience and experiment with a lot of different drugs, starting with alcohol and marijuana, on to LSD, PCP, uppers and downers, even some speed. But heroin was my drug of choice. I started injecting when I was 22 years old.
I tried many times to clean up my act. Church, retreats, detox programs (14, 21, or 28 days). Phoenix House three different times. But I always came back to the big H: Horse, P-funk, Super-D. Then came numerous arrests and jail. The want and need to have drugs brought all this about. Did I care at the time? "Hell, no!" on the outside. But I was devastated on the inside.
Around 1996, I was told that I tested positive for HIV, and being uneducated about that particular virus, I paid little attention. But in 2000, I decided to get serious about myself, my addiction, and my HIV. I did two things: I became a peer educator and used the harm reduction model in my life. I enrolled in methadone maintenance and I got deeper into peer education, got more training, and eventually got a job as an educator.
Something marvelous happened to me during that time. I got good at it. So good that I was chosen to be part of a new peer education program at Woodhull Hospital, the same hospital that my doctor practiced at. Everything was coming together for me. Dealing with others helped me with my struggles.
I'm so fortunate in having a great doctor in my life -- a doctor who has stuck by me even when I was at my worst. A guy whose medical equipment, injection equipment, even digital scales, I pilfered from the sanctity of his inner office. He continued seeing me during the height of my addictive behavior.
In 2003, he advised me that I had tested positive for hep C, but I didn't take heed because he told me that my liver enzymes were at a workable level. It wasn't bad enough being HIV-positive since 1988 -- now I had to deal with being co-infected. So I left it at that, never speaking about it or asking for more info. I was totally ignorant and uneducated about the virus or that it could be treated with medication. All I ever heard was the "word on the street" type of information. I should have known better, but I was used to being misinformed by the uninformed.
By 2004, my HIV viral load was staying undetectable on the average and I was happy about that. About that time, my doctor told me that I was a good candidate for interferon treatment for the hep C. I was all for it until the syringes arrived at my house, along with the medication. I called the whole thing off! I was fearful of having a drug relapse, having needles around and available.
Was this my "out" for not attempting the treatment? Well, that's where I was in my recovery process. But in 2006, my doctor and I revisited the subject. A plan was available where you came once a week, and your injections were given by an NP who monitored your weight and blood pressure and gave you semimonthly blood tests. And he told me that some people had beat the virus due to the meds. I can tell you for sure that the fear of not surviving greatly outweighed the fear of the unknown -- that unknown being what the treatment entailed.
If I could stay undetectable for HIV for over four years, I knew I was about being adherent to my meds. My meds had become my life. I knew I could do it. Now I was ready! I wanted it more than anything now.
I had heard the word on the street concerning the side effects and I knew what that was like after the HIV meds. But the fact that I might be able to beat hep C just overruled whatever side effects the meds had in store for me. After each injection, I would feel dead tired by the end of the day, but that would get better after a couple of days. My normal weight was around 140 to 150 pounds, but on the interferon I got down to 131. I was very comfortable carrying less weight and looked at it as a loss of excess. But the mood changes were totally unexpected. I found myself being overly sensitive about small details of everyday living. I would cry if I didn't get my needs met or if people said things that hurt my feelings. I didn't know what was wrong until someone pointed out that it was probably the medication.
I knew I had to stay strong and stay with the meds no matter what. I had trouble sleeping, but I never took meds for that -- I just drank tea. It was a struggle dealing with the medication. But my main focus was to beat that mean old hep C with the help of my spirituality and the support of my good friends.
After the first month of treatment, my hep C viral load went to undetectable, from a few million copies at the start. There is a God! I stayed on treatment for about 42 weeks and every blood test and doctor visit was encouraging. This is what kept me going -- the knowledge that I could and would beat this virus; the same virus that I had let into my life by not caring about myself and the others in my life.
Today is different for me: happier, healthier and much more positive. Five months after stopping treatment, my hep C viral load is still undetectable and I intend to keep working for myself and others to keep it at bay. Thanks for letting me share.
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.