I'm Undetectable, but My CD4 Dropped: I Thought I Was an Outlier, but I'm Not So Different After All
A few weeks ago, I got my latest test results back. My CD4 count had dropped 135 points: 135. I was scared, depressed, in shock. What did I do wrong? I take my meds every day. Are they losing their effectiveness? Who can I talk to about this?
Later that day, per the normal routine, I received a call from my doctor's office. "Hi, Takia? This is the nurse from your doctor's office. He just wanted me to let you know that your test results are in, and you are still managing well. You're still undetectable and everything looks great. We will see you in six months." Seems contradictory? I think so too.
See, I am what I call an outlier. Diagnosed barely a year ago, I am what many may call fortunate. I learned of my diagnosis due to a blood donation to the Red Cross. Before then, I was tested every six months, until a break in health care caused a lapse in testing of about 18 months. So, I was very newly infected when I was diagnosed.
From the beginning, I have been a picture of everything right. I began treatment quickly. My viral load dropped soon thereafter, and my CD4 count shot up. In an effort to take control of this new life, I dove headfirst into educating myself. In a short time, I have connected with many, many long-term survivors who are living fabulous lives and are showing us newbies how it is done.
And, for the most part, my life is great. I have a decent career with great health care, I am healthy, and I have created a support system for myself of people who understand the unique struggle I have before me. So now to the problem at hand. What is up with this drop in my CD4 count?
I want to talk to my friends who have been in the struggle longer than I have for advice and comfort, but honestly, I am afraid. You see, my count dropped from 1,585 to 1,450. Even as I type this, I see some long-term survivors rolling their eyes. But for me, it is a very real concern. At what point do I sound an alarm and advocate for my own health? Yes, my count was insanely high, I get that. I also get that it still is at a place that many will unfortunately never see, but something is happening in my body, and I'd like to know what to do about it.
And it's not just about my CD4 count. It is about my overall health. Lately, I have been getting sick more frequently, and fortunately, I recover well, but it affects every area of my life. There are days I do not feel well and force my way to work anyhow because I have used all my personal time, and people are already talking. I have been written up for attendance and have recently found out that the Family and Medical Leave Act (FMLA) will not quite cover my days out. I am not missing time because I am living with HIV, I am missing time due to what are considered "normal" illnesses (colds, flu, etc.). Never mind that I may be more susceptible to these illnesses because I am living with HIV.
But how can I complain when I hear the stories of my friends who have not been as fortunate as I have? I can hear them in my head saying, "Suck it up, buttercup." So I do. Or at least I try. Which leaves me feeling alone.
But then I remind myself, I am not alone, and I reach out to a friend who has been living with HIV for over 30 years. And after he rolls his eyes, he assures me that I in fact don't need to worry. People's CD4 count can vary from one day to the next, depending on what is going on in their body.
What is more important is the CD4 percentage, which is the measurement of how many lymphocyte cells are CD4 cells. This measurement isn't as sensitive to variance and is more indicative of whether the immune system is being damaged by HIV. In fact, I had a nasty upper respiratory infection prior to seeing my doctor, so this information made me feel much better.
So, what was my takeaway from all this? I learned that there is still so much to learn. I have surrounded myself with people who have a wealth of knowledge and experience that I should take advantage of as I continue to adjust to my new normal. Most importantly, I learned that I am not that much of an outlier. My friends and I aren't so different at all.
Takia Miller is the founder of Love's Child Ministries, Inc., a nonprofit she created to advocate for people living with HIV by educating the public and tackling the associated stigma. A native of Winston-Salem, she graduated from Winston-Salem State University, where she majored in mass communications. She is the mother of two adult sons, whom she still affectionately refers to as Thing 1 and Thing 2.