The Numbers Game
Sometimes what you do know can hurt you.
by Jeff Berry
When I first started antiretroviral therapy nearly 20 years ago, I would watch my T-cells like a hawk. Initially they hovered at around 500, and since I was experiencing repeated episodes of oral thrush, therapy at that time was recommended. After I started on drugs, my CD4 count shot up to about 800, and I felt victorious, as though I had won the “HIV” lottery.
The numbers quickly fell back down to 500, though, and I thought maybe I had read the numbers on my lottery ticket incorrectly, and that I had actually been given a losing ticket instead. And as those numbers continued to steadily creep down, down, down over the next few years, I began to feel really, really cheated—in fact, I felt robbed.
Those absolute numbers seemed so very important to me at the time, because I had learned that they were a measurement of how my immune system was functioning, and I have a virus which compromises the immune system. But the funny thing was, it was just a number. I felt pretty much the same, physically. A few skin rashes with the occasional bout of thrush, but otherwise, that was about it.
I have learned—at least for myself—that it is a very tricky game, this numbers game.
I decided very early on to put the numbers in their place, so to speak. I realized that they indeed had their place, and that they served their function, so I gave them their due. But I also learned not to invest too much power in them, or risk falling into despair over the fact that my body was failing me, so that it then became this vicious cycle that fed off of itself, kind of a catch-22 with the virus, if you will.
Yes, it was important to take the tests, and yes, it was important to get the results, but, no, I couldn’t give in to what they were actually telling me, that I was getting sicker and weaker every day. If I had taken those numbers at face value, I probably would have convinced myself to stop taking the drugs, thinking they weren’t doing me any good anyway.
I think that ultimately I found a good balance in my life, and I learned to listen to my own body, and to trust what it was telling me. I weighed how I felt physically against the numbers in my test results when it came time to making important decisions regarding my own healthcare. To be fair, I’ve also had the luxury of adding more effective drugs to my regimen, which luckily came along for me at just the right time. I’ve also always had exceptional physicians, whom I could trust, and access to accurate and reliable sources of information about HIV and its treatment. But equally important, for me at least, was that I was beginning to see the value in taking care of myself mentally, emotionally, and spiritually as well.
Today, with even more new drugs, keeping my balance continues to be important. I haven’t had to change my therapy in years, but for those who do, our annual HIV Drug Guide provides handy information.
2007 was a banner year in the treatment of HIV. With the approval of two new drugs and another expected to be approved in early 2008, and dozens more in the pipeline, suddenly there is hope on the horizon. Hope for regimens that are simpler to follow. Hope for drugs that are much more tolerable. And hope for fewer pills that are easier to swallow.
This year’s Positively Aware HIV Drug Guide contains all sorts of helpful, reliable and really useful information about the treatment of HIV. You’ll read about drug side effects, some of which you may experience, most of which hopefully you never will. You’ll also find helpful tips on what you can do to minimize or avoid some side effects altogether. And you will learn about potential drug interactions, and in so doing learn to avoid drugs that, if taken together, could harm you, or cause them to not work in the way that they should.
But still important as ever—adherence. A one-pill, once a day regimen might be easier to take, but it is also going to be less forgiving if you regularly miss doses. And these newer drugs need to be chosen wisely, lest we unwittingly create drug resistant strains of the virus by choosing powerful regimens that we can’t adhere to, thereby quickly knocking out the promise of the new drugs before they are ever realized.
New with this year’s drug guide is an introductory page by Joel Gallant, MD, which is a good, basic primer on the different drug classes and how they work. Thanks, Joel! Special thanks, as always, to our drug guide pharmacist, who this year is Mariela Diaz-Linares, Pharm.D.
And finally, it’s been seven years since we’ve given the magazine a facelift, and so with this issue you’ll find some changes—among them a new logo, and a new look. We trust you’ll like these changes, and hope they will make reading Positively Aware an even more enjoyable and rewarding experience for you, our readers. Look for more improvements and changes throughout the coming year. As always, we welcome your comments and suggestions.
Knowledge is strength, and knowledge is power. But all of this information is really just a guide, a tool, a roadmap to living a healthier, smarter life with HIV. What you do with that life, and how you ultimately choose to lead it, is going to be up to you.
Take care of yourself, and each other.