"But this is 15 years later now, on the same medication. I am far more comfortable with the figures and far less emotionally charged when the results come out."
My previous posts have explored how I felt throughout but there is a medical journal that accompanies each year after HIV.
When I was diagnosed I went through a series of tests. The issue wasn’t my viral load, which hovered around 15,000 to 25,000, and I knew quickly that this was not high. The issue was the low CD4 count – the bit of that indicated immunity. I was tested every month for about six months with each result between 200 and 300. I literally and mathematically felt that fraction healthier or more ill depending on that result even if I wasn’t actually ill at all.
In fact, I wasn’t ill throughout that period. Not so much as a cold. It almost begged the question over its existence at all but every month that number came back low. Since the decision to take combination therapy that figure dramatically increased and the viral load instantly went to “undetectable”. After this, the need for such regular testing decreased to once every six months.
The testing was thorough with checks on cholesterol, Vitamin D and all sorts of specific markers of HIV progression that I really indulged in understanding and relating to, to the point of literally having a jog around the park before one of the tests just to see if that did something? I went through a phase of inanely eating lots of apples just to boost something somewhere.
In reality there is no rhyme or reason. Depending on the day, depending on the testing, depending even on the season of the year can all have small effects on the small amount of digits I was concentrating on and my doctor (the lovely one called Lisa I mentioned before) really tried to get me to understand it was a trend they were looking for not whether it was 243 or 242.
The biggest change in lifestyle I had (and still have) to make is organisation. I cannot miss a dose, cannot run out of medication and cannot miss appointments. What I understood quickly is that the responsibility of the management of the disease is not my doctors’ but mine and mine alone. And I tell you, its amazing how quickly you thrust the importance of that up the list and happily do it. Its not a bind, its not a life sentence, its something I do for me. Do I know how many I have left right now? Yes. 2-and-a-half packs of both, lasting 2-and-a-half months with an appointment nicely in a months’ time. These days my CD4 count can reach up to 600 or even 700 and while not the range a healthy person might have (around 800-1500), its fine. The more important one to watch is the viral load staying undetectable. If that changed and became detectable its suggestive of the medication not working any more. But this is 15 years later now, on the same medication. I am far more comfortable with the figures and far less emotionally charged when the results come out.
We are really lucky in the western world. We have this medical resource available, doctors on hand and expensive pills available to keep us alive. The way I see it, the least I can do is not feel “hard done by” having the disease and sharing my experience and helping others.