After 40 years of the HIV epidemic, most of us living with HIV would have heard medical terms such as T-cells, viral load, CD4 count etc. We hear these terms every time we have our check-ups and usually experience some relief when we hear they are going well. We also experience a slight disappointment when they aren’t. At my latest check-up, I experienced both relief and disappointment.
My HIV journey started back in 2017, when I weighed a wafer-thin 50kgs. I had a bout of double pneumonia, about eight opportunistic infections, a viral load of 1.4 million copies/mL and seven lonely CD4 cells (yes, I later named them after the seven dwarves). To put this in perspective, normally a person’s CD4 count is between 500 and 1500.
What did I have? In short, I was told I had AIDS. I was too sick to even care about the diagnosis or how long I’d been living undiagnosed with HIV.
I started ARVs (HIV antiretroviral medication) close to three months after diagnosis, after the other infections had cleared enough. My adherence was rocky for the first year, but my viral load went down dramatically and my CD4 count went up as well. Both good things!
By my second year of living with HIV, my CD4 count was up to 200, I was told by my immunologist that it will take a very long time to reach an acceptable, healthy level (greater than 500 CD4), so to see it at 200 in the second year gave me hope that it would get there sooner than expected.
Who knew that those sleepy little CD4 cells took naps!
Four and a half years on, and at my latest CD4 check-up in May 2022, I was expecting to hear “congratulations mister! You’ve reached your goal of 500+ CD4” … Alas, I had 464. This was still great news as this meant they were still climbing. Rather than celebrate with a sigh of relief, I was overcome with disappointment.
Is this my fault they are taking forever? Is there something more I could be doing to strengthen my immune system?
As if quitting smoking, coffee and taking up regular exercise wasn’t enough. Now, I’ve heard about methods such as intermittent fasting, time restricted eating, supplements and boosters. No thanks. Not for me.
As far as I can see, there is nothing wrong with my diet. I eat well and (mostly) make healthy choices, except Friday nights and weekends. That’s my indulgent time; beer and burritos. But it isn’t excessive, and I wouldn’t call it binging either.
My HIV doctor is not concerned, she told me long ago that this will take some time, but I still can’t help but feel a little deflated. Working in the HIV sector, I often hear of other people’s CD4 counts. Some people’s average at 800-900 and others have over 1400. This is where emotion takes over logic – welcome to CD4 envy!
Of course, I am absolutely happy that my peers’ immune systems are strong, this is important for us living with HIV. It’s worth noting that these days, our doctors rely more on the viral load figure as a measure of good health, rather than the CD4 count.
Yet I still run a marathon of questions through my mind in a split second, and have a momentary (shameful) blight of envy that my CD4 count is only a quarter of those with high counts. I can’t help it. Especially in some cases where someone’s CD4 rises so quickly to over 1000 in less than six months. I guess this really does prove that HIV affects everyone differently.
Don’t get me wrong, I don’t hold any grudges or animosity to those with a healthy CD4 count, this is just me sharing something I experience from time to time as a person living with HIV.
I know I will reach my goal eventually. I just sometimes want to jump to the good part and skip all the waiting. Imagine all the life and experiences I’d miss out on if I did though. If there are two things that the last four and half years living with HIV have taught me, they would be patience and above all, resilience.
If you’re living with HIV in NSW and have any questions about HIV, medications, CD4 counts etc, or you just want to chat with a peer (someone else living with HIV), you can easily get in touch with Positive Life NSW on (02) 8357 8386 or 1800 245 677.