One of the challenges I have dealt with after diagnosis is what I call “the numbers game”. That is the stressful time when you have to get blood taken and await the numbers that indicate your results. After 18 years you’d think I would be used to the routine but still it gets to me every time. As soon as the blood is out of my arm and into the test tube I start to worry about what the numbers will be.

 

The two particular blood tests that you will become very familiar with post-diagnosis are the t-cell or CD4 count and the viral load test. I found a really helpful explanation of t-cells on the AIDSmap website (http://www.aidsmap.com/cms1044596.aspx).

 

Everyone has an immune system made of various cells that are designed to protect the body from infection and illness. In an uninfected person the t-cell count could range from 500 to 1 200 or higher. A person with HIV will see their t-cell count gradually decline over time and eventually when the t-cell count falls below a certain level a person becomes much more vulnerable to potential serious illness and maybe even death. Nowadays, doctors will usually recommend beginning antiretroviral treatment before your t-cell count drops below 350.

 

Being a long-term survivor, I only had to contend with the t-cell count at first, as viral load testing didn’t start until the late 1990s.  At first I would panic at the first sign of a cold, convincing myself that it was the start of my decline to illness and death. It took a few years before I could accept that I wasn’t going to get any HIV-related illness with a t-cell count of over 500.

 

I also became rather preoccupied with my t-cell counts during the early years of diagnosis. I am a bit of a nerd with numbers (got an A grade in statistics!) so I have all my blood results from the last 18 years plotted onto a spreadsheet on my computer! Over time my t-cell count has fluctuated, which is natural. It can change depending on many factors, so it is important to look at trends over time rather than a single result.

 

However, over the years I have realised that it is more important to concentrate on how I actually feel within myself rather than put all the emphasis on the numbers. Easier said than done, particularly when the numbers may indicate cause for concern.

 

Fortunately my latest t-cell count, which I received today, showed a rise from 368 to 711, the highest it has been since 1994! Something of a surprise as the two previous counts this year had been going down, so I’m not sure if this is a blip or error but I’m happy to accept it!