Four years ago I was diagnosed as HIV+ and put immediately on medication by my doctor. “Hit ‘em hard and hit ‘em mean”, he told me, by which he meant that if we caught the virus early enough he believed we could stop it from doing too much harm later on, or slow down the effects at least. That was the medical theory to which he subscribed, you see. What he hadn’t quite told me was that there were a significant amount of side effects I would have to endure, no, suffer compared to if I put off treatment to a later date.
Schools of thought
My doctor knew best, I assumed, and I did what I was told. I internet researched at the time, and remember discovering two schools of medical thought on the issue. If the virus is detected early enough – in a three month window, like it had with me – you could either (a) “hit ‘em hard and hit ‘em mean” or (b) just carry on observing it until such time as you needed to go on medication. Unfortunately option (c) become un-positive was not an option and appears unlikely ever to be. So (a) it was, because I listened to my doctor and thought he knew what he was talking about.
The side effects quickly came in the guise of diarrhoea, sweats, tiredness, grogginess and – yes, oh yes! – those vivid dreams that they warn you about. I won’t bore you with the details of my combination therapy, except to tell you that it was a heady mix of three pills that had to be taken strictly at the same time every day, and at certain times of the day. This made going out something of a challenge and turned me into, not so much a perennial clockwatcher, as a perennial Ijust- wish-I’d-stayed-at-home-if-it-was-thismuch- trouble person. The vivid dreams were more like nasty nightmares. My partner would tell me the next morning about how I had been thrashing around in bed as if I were hunting wilderbeast on the plains of Africa.
I watched carefully for telltale signs of lipodystrophy (“No, not my body, not my gym-crafted body that I worked so hard all my gay life to achieve to be ruined in a matter of months!!!”). I did notice a thickening around the waist and I endured extra sit-ups to battle any unsightly bulge, real or imagined.
Then my doctor decided he’d had enough of caring for HIV+ gay boys in Sydney, and was fleeing to the peace and serenity of Byron Bay instead. I bid him adieu and, after seven months on medication, also informed him I was planning to take a break from them too. I was going on a three week trip to Europe with my partner and didn’t want to have to deal with having to take medication across different time zones and customs interrogations during it.
My blissful vacation
As a farewell “gift” my doctor put me on the outlandishly bright orange-coloured pills which are quite possibly the nastiest drug ever given to someone to make them stay healthy. For the two weeks that I had to take it “to finish off my treatment session” I remember virtually nothing. Nil. Nano. All a blur.
Thankfully by the time I got shoved on the plane to London I could sleep it all off, plus the brown-coloured side-effects, and arrived at Heathrow feeling quite bedazzled with myself when I got there. I felt like a weight had been lifted from my shoulders. I felt like I was living again. I felt like I was myself again.
It was a blissful vacation, from the medication as well. It ended up lasting three years. Not the European bit, you understand. I wish! Then two years into my “treatment break” I got very inflamed gums. I waited for them to get better. They didn’t. Instead my gums let me down, and retreated and retreated to the point where I had to see my dentist about them. If you know how much I hate going to the dentist you would understand why this was a big deal. He immediately sent me to a periodontist (i.e. gum specialist). One of the first questions on the patient information list when I got to reception was “have you ever had AIDS?” I told myself, “Of course, I haven’t. I’m just HIV+, so I’m not lying.” The periodontist examined my gums and told me to come back in six months if it hadn’t got better.
It never did. The gums never came back, but I never went back either. At that stage I had a hunch it was the HIV virus in me plotting a comeback. All through this time my CD4 count was above 350 and my viral load was high but live-with-able. Then earlier this year my percentage took a big dive from 21% to 14%. I read on the internet that once you went below 17% you could be considered an AIDS patient. I still felt healthy enough.
“Let’s wait and see if these figures are just an aberration,” my new doctor said with a shrug. He really only seemed keen to get me out of the surgery so he could finish for the night, but then, who isn’t like that at 7pm on a Tuesday night at work! Strangely my next set of figures were good. My CD4 went up to 360 or so and the percentage jumped back up to 19%. So far so good. Life went on. I was HIV+ but not on meds. I was doing good. I was a bit tired, yes, and I did get night sweats occasionally and had a bit of a cough, but so did everyone at this time of year, I told myself.
It looked like a small purple knob
It was when I went swimming with a friend in late summer that it all came crashing down around me. As we lay on our towels, on our stomachs, he glanced over at the back of my left leg and saw what looked like a small purple knob. “Get that seen to,” he told me. “Yeah, yeah, I’ve been meaning to,” I told him. “I think it might be a cyst”.
“Please, do it quickly,” he implored me. He was a cancer survivor, so I felt like I couldn’t challenge his words. I promised to make a booking to see the doctor the following week. I was true to my word and the doctor eyed it, without much suspicion. “Yes, looks like a cyst,” he said. “We’ll cut it out and send it off to the lab to check. It’ll only need two stitches.”
Off he chopped it. It was quite large, almost 10cm, which surprised me. He popped it in a jar and told me to come back next week to get the stitches out and found out what kind of cyst it was.
He called me three days later. “They found traces of Kaposi Sarcoma on the extraction,” he informed me. I was bewildered. This was the nasty skin disease that had affected many gay men in the 80s in the final stages of AIDS. Not me! NOT ME!!! “We have to put you on medication straight away,” I heard him tell me in a far off universe. When checking my bloods my CD4 had dropped to 210 and my viral load had jumped to 100,000. My percentage was 15. My body was giving up on me. Either that or it was telling it needed some help in the form of meds.
And, so within a few days I was back on medication. At least now the three pills I had previously taken were only two (with the Earlier this year my percentage took a big dive this was the nasty skin disease that affected gay men in the 80s promise it would be one by the end of the year, thanks to the improvements in medical science). I also didn’t have to be so stringent about taking the pills at the very same minute every day. Hurrah!
So the holiday was over…and now the vivid dreams are back (sometime I’ll have to tell you about the amazing one I had where I was a chocolatier during World War II in Paris). There’s been no recurrence of the KS (touch wood), my gums are going to survive and I feel pretty good, if still a little groggy. Still, next time I go on holidays I’m taking my meds with me!
