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It's hard to put a date on when my story started. I guess, I'll just be novel and start at the beginning.
In 1985, I met a man and fell head over heels in love. I was love-struck and young and naive, if not stupid. I grew up believing in the basic goodness of people. There are any number of excuses I could make, but the bottom line is I didn't see what was right in front of my face. HIV was still fairly new and I guess in some ways I believed that it was something that happened to people in big cities like New York and primarily to people who slept around.
There were warning signs flashing at me after the first few months of the relationship that I might recognize now, but at the time, I didn't want to believe. All the same excuses you hear men telling their wives to explain where they were, why they were late, etc. To make a long story short, I found out that my boyfriend was sleeping around on me.....a lot! While I give my trust freely, a breech of trust tends to shock me to my core and I can honestly say that I have issues trusting people who I feel betrayed me ever again. When I found out how much "activity" my partner was engaged in, I broke it off and moved out.
A couple of weeks later, I had a blood test for HIV and it came back negative. Again, not to make excuses, but we really didn't have as many answers about HIV at the time as we do now. I assumed I was in the clear and made sure that I never practiced unsafe sex again.
About a month or so after leaving that relationship, I had an odd illness. Fever, chills, body rash. Went to the clinic and they diagnosed it as just a viral illness that would probably go away on it's own in about a week. And in a way, they were right. The symptoms cleared up and everything was normal. I didn't think anything of it.
Fast forward a few years later. I met my current boyfriend of 14 years and we were getting ready to move. I heard from a friend of a friend that my cheating ex died of AIDS that year. Of course I wasn't particularly concerned about myself. I felt bad for him in some ways. Those who say you never get over your first love are wrong. You often do. I had long since forgiven myself for my poor judgement in that relationship and was glad I had extricated myself from it. I felt badly for him, because I guess I am just a nice person and wouldn't wish HIV on anyone.
Fast forward again to 1999. I had moved and resettled with my current boyfriend to another state. We had bought a home together, both had decent jobs. Life was pretty good. It was about that time that my health began to take a turn for the crapper. I gradually lost some weight, was having a bit of difficulty swallowing from time to time, and fatigued. I assumed it was the stress of my job and tried to make the most of it. I didn't really have a regular physician. Growing up poor, we went to the doc when we were REALLY sick. Regular checkups or visits for minor complaints were just not the way I was raised.
And then I got the flu in October of 1999. Mild fever and body aches and fatigue. It finally worsened to the point that it started to hurt to cough and I was having problems staying awake or alert in meetings at work. I went to a clinic again and was given antibiotics and told it would get better in about a week.
A week later, I felt worse. Still was battling the fever and my lungs REALLY hurt. I went to a different minor emergency clinic and got x-rays. Diagnosis: atypical pneumonia. In addition, this doctor was a bit more thorough in his examination and weighed me and examined my throat. My weight had gone from 140lbs (I was always thin anyway and am only 5'7") to 110lbs. He shoved a mirror in my face and told me to open my mouth and pointed at some white patches in there and said that it was thrush. That doc told me point blank that I needed to have an HIV test as soon as I could. He gave me a couple of different antibiotics and anti-fungal troches for the thrush and referred me to another doc who was in my health care plan.
I took leave from work and couple of weeks later when I felt a little better, I went down to the public health department for an HIV test. At this point I was beginning to feel a little more than fear. I had read up on everything and realized that my HIV test years ago would have preceeded my seroconversion which is what that strange transient viral illness was was.
To make a long story short, my test came back positive. I began to get over the pneumonia and I switched doctors at that point to a doctor who had experience treating people with HIV disease. By this time, it was mid-December. The earliest I could get in to see the new doctor was January. In the meantime, I got hooked on ativan. About a two weeks before my appointment, I went to the lab to had my initial bloodwork done so that my doctor had a reasonable grasp on my condition before my first appointment. He was kind enough to tell me to bring my partner with me to my first appointment.
By the time we got there, I had spent the better part of every waking hour educating myself on HIV disease and had made plans for every scenario. I knew how long I had been infected and I wasn't thinking the news would be great, but I was still hopeful. Doc pulled out my lab work and gave me the two numbers that really told me everything I needed to know:
Viral Load: 250000 copies per ml. A high viral load is considered anything above 40000 per ml and indicative of disease progression.
The second number was the real punch in the gut:
My CD4 count: 22 cells (normally the count would be between 500-1000 t-cells...less than 200 t-cells is clinical diagnosis of AIDS as opposed to just being HIV+).
I not only had full-blown AIDS, my immune system was virtually non-existant. So I had no real choice. There was no waiting to hit the treatment threshold. I had to start antivirals immediately.
I came armed with information and told my doctor that I wanted to go on a regimen of Sustiva (an NNRTI drug that had just been approved) and Combivir (an NRTI duo of AZT and 3TC). Between that and multivitamins and PCP prophylaxis which is standard in anyone with less than 200 t-cells, it put my pill burden at 7 pills a day split between twelve hours.
Determination and pure willpower is the best friend of anyone struggling with chronic illness as I discovered very rapidly. I was determined to not miss any doses and to make my regimen last as long as I could. I tapered myself off the ativan and had the doc prescribe an anti-depressant.
3 months later, my viral load was undectable which basically meant I had less than 50 copies (the threshold of detectability for the ultrasensative test) per ml and my t-cells had risen to the 70's. Not great on the latter, but it was a step up.
I regained the lost weight and I began to feel better. I educated myself even more and in the next year I broached the notion of an experimental treatment to my doctor that would hopefully improve my t-cell count which had stayed around 150. Luckily, my insurance would cover the use of the drug (which was VERY expensive being approximately 5000 dollars per cycle every 8 weeks). I had to learn how to reconstitution, draw up, and inject myself with the drug twice a day for 5 days. It had nasty side effects. The first couple of days are fine, but by halfway through the course you start to feel like you have the worst flu ever. We were prepared for that. It was mostly a matter of keeping the fever down to a managable level the last two days of each course. I'd usually start a cycle on Wednesday and usually start feeling really bad by Friday afternoon. Saturday and Sunday were just a blur of getting through it. Monday I would take a vacation day or personal day from work to recover and by Tuesday the side-effects had resolved.
I did that for about a year. That gained me a boost to my t-cells that has remained steady in the mid-200's ever since. That allowed to me to cease prophylaxis and make my bloodwork bi-annual instead of quarterly.
A couple of weeks ago I got the news that I was still stable. My viral load has been undetectable for 5 years and my t-cells are still holding steady.
All in all, I'm pretty lucky. It's been a long crawl to a semblance of health, but I am determined to live and live well as long as I possibly can. I have missed 1 dose of my meds in 5 years (most cases of regimen failure are the result of missed doses) and I am celebrated strange anniversaries like living with HIV for 20 years and being undetectable for 5 years while looking forward to the 15th anniversary with my partner (who thankfully tested negative for HIV).
So that's my story.
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