22 December 2016

AIDSiversary 19

Who knew?! Each year a new milestone. When I got my AIDS diagnosis 19 years ago, I really didn’t think I would last the month, let alone 19 years with no fade-out in sight. But here I am, testament to persistence and most of all to science and a health care system that, for all its faults, has helped me regain my health and keep myself in a pretty good state far longer than I thought was possible. My AIDS diagnosis is now old enough to drink in Ontario and British Columbia!

Yesterday, which I am now referring to as AIDSiversary Eve, I woke up having had a strange dream. In my dream, some strangers in a hospital outpatient clinic were hesitantly announcing to me that my treatment had failed and they looked terribly worried. In the background of the dream, what seemed more distressing to me: a toilet that was spewing outward rather than flushing down. I was thinking that the plumbing emergency was a little more pressing than the AIDS thing.

I could be serene about the dreamtime treatment failure because I have a very good grasp of my treatment and its follow-up. My last lab results: viral load undetectable (under 40 copies per ml), CD4 count 212 (more about this later), and CD4 percentage 23 (more about this later, too). I also have a healthy dose of skepticism when it comes to the mystical, so dreams aren’t so significant to me, even though I seem to be fixated on discussing this one. AIDS has apparently not focused my thought process or contributed to my consistency!

I can afford not to be alarmed about a CD4+ count of 212 because I am a cautionary tale on the topic of testing, not an example to be followed. I wasn’t tested until I had symptoms of my AIDS-defining pneumocystis carinii pneumonia and started this journey with a CD4+ count of 4, so 212 looks rather good from that perspective.

The CD4+ percentage is another matter. It should be 35%, I believe, so at 23% I am not there, but not alarmed. I do have a certain degree of distrust in this last result of my tests, however, as the percentage leapt by an unbelievable number — my previous result was 15% and I have been hovering around the 15%-19% range for years. We shall see at the next measure.

Speaking of the next measure, there has been a change in the standards of HIV care here that I wasn’t very happy with at first, but have come to accept. For those who are stable — undetectable for 2 years and CD4+ of a reasonable level — the follow-up is 6 months. Many of the doctors on the committee where I sit as a community representative didn’t really see the value in doing very regular CD4+ tests at all, so I guess my unreasonable CD4+ level doesn’t really concern anyone. It doesn’t particularly concern me, either, considering my starting point.

Another big reason my dream didn’t worry me so much is that I have never actually had a treatment failure, so I have a ton of options left if it should ever happen. I have changed my treatment twice (so 3 regimes total), but always due to intolerance of certain side effects. I have some permanent-looking body changes that are partly due to my 7½ years on my first regime, and all that is left of the restless sleeping of the 2½ years of the second regime are bad memories. No troubles with what I’m on, bone density scan pending.

So, 19 years and all is well. Now give me a happier dream tonight — something burly and hairy and not very clothed, maybe?

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