Editor: part three of our continuing story of surviving hemophilia is here.
“In my first post, I talked a fair amount about my experience with the complication of hemophilia known as HIV. HIV, as most people know, was introduced into the blood supplies sometime in the late 1970s. I mentioned that I contracted HIV sometime before 1981, as they tested blood that had been stored from that date and it tested positive for HIV. I was notified of my HIV status some time around February of 1985, about four months before I graduated from high school. At first I handled this news fairly well. Perhaps I was in shock. It wasn’t long until HIV ruined a solid relationship, and I entered into a fairly deep depression. This was unusual for me. I had always handled adversity fairly well.
“The first drugs to treat HIV were really hard on the system. You had to take a lot of drugs, quite often, and they had side effects that could overwhelm the system requiring frequent changes of drugs. Thankfully there was a steady supply of new drugs available as the whole world struggled to overcome this devastating disease. It wasn’t until the late 1990s or early 2000s that drugs became much easier to take and had minimal side effects. I have been on stable HIV drugs for the better part of 20 years now and have maintained good results.
“The emotional side of HIV was also devastating. I was active in the hemophilia community, and lost friends to the disease. In one case, three brothers died from HIV, two within a week of each other. There were many notable cases where discrimination drove people out of schools, work and other group activities. Homes were burned. It seemed that HIV either brought out the worst in people or the best. There seemed to be no middle ground. I was lucky in that I rarely had to face any discrimination because of my HIV status, although I am single to this day because of the stigma of HIV and my own reaction to it.
“For me, HIV took a dreadful turn in early 1994, when I contracted crypt0coccal meningitis, an opportunistic infection. This infection was fungal and the list of medications to treat it was quite short. Amphoteracin was the primary treatment, the one I was started on in the hospital when the infection first struck. Amphoteracin is known by those who’ve had to use it as “Ampho-terrible”. This is quite an apt description. After several months on Amphoteracin, I was switched to Diflucan, an oral antifungal, which worked fairly well. After almost a year on Diflucan I started getting rashes, primarily on my limbs, but also a bit on my trunk. It was thought that this rash was fungal in nature, an extension of the meningitis causing fungus. They treated me with Diflucan ointment. The rash exploded. That was when they realized that the rash was an allergic reaction to the Diflucan! They switched me to Sporanox, the only other oral drug that was effective against the Cryptococcus fungus. After about nine months on Sporanox I developed a rash reaction to that drug also. They restarted the Amphoteracin, and I was on that for the better part of eight years. That’s no small thing, as treatment was taken every week day and was an infusion that went in over almost eight hours time. I had a new full time job. Then, in the early 2000s, with drug fatigue setting in we decided to take a break from the Amphoteracin. The new HIV drugs were much more tolerable and effective and my HIV viral loads had dropped significantly. I can’t now remember if they were undetectable at that time or not, but we never restarted the Amphoteracin.
“I’ve only had a minor hiccup or two in the time since then, when I couldn’t afford multiple HIV drugs and so I stopped one. That was a big mistake. The object lesson here is to take drugs as directed and don’t make changes to them on your own without medical advice. My viral loads rose during that time and I had to stop all drugs and test to make sure the drugs I had been using were still affective for me. Luckily I did no long term damage and the drugs were still effective. I was able to restart them without delay and my viral loads again dropped to undetectable levels.
“Since that time, the drugs have been combined into one pill that I take every morning. My viral loads remain undetectable and HIV is something I now never think about. One less thing, right? Good thing too, because it wasn’t long before an old friend came to play. That’s a story for another day. That’s also the last story of my life with hemophilia, so far. Let’s keep it that way, shall we?”
- A History of Hemophilia A: A Bleeder’s Story (Part 1), Overview of life with hemophilia and it’s complications.
- A History of Hemophilia A: A Bleeder’s Story (Part 2), Hemophilia, bleeding and it’s treatment.
- A History of Hemophilia A: A Bleeder’s Story (Part 3), HIV infection and it’s complications.
- A History of Hemophilia A: A Bleeder’s Story (Part 4), Hepatitis C infection and it’s complications.