The results are in.
I tested HIV-positive. Now what?
The wait is over. Dr. Amiraian’s office called stating that “he wants me to come in.” I recall walking down Broadway on that cold and brisk autumn afternoon. Fall foliage had peaked weeks ago and a feeling of winter was in the air. The walk down, only fifteen city blocks, seemed endless. I had prepared myself for the worse, but hoped for the best. Regardless of the outcome of this blood work, I told myself, things will be okay. As I approached the entrance, I pulled myself up the stairwell and made my way down the hallway to Dr. Amiriain’s office. I was exhausted—physically, emotionally, and spiritually. I checked in at the reception desk and had a seat in the waiting room. Everything seemed as if it were in slow motion. Were the hands on the clock even moving? The waiting room was crowded. It was the end of a mid-week workday. One by one, patients were leaving the office and I was one of the last remaining to be seen. I kept telling myself, breathe, Robert, breathe. My heart was racing and my palms were sweaty. I had had these feelings only once before, and that was at my Dad’s funeral at which I passed out in the church pew only to awaken to smelling salt. Please, not here. Not now—an anxiety attack coming on quick.
And then I hear the receptionist call out, “Robert Quinn. Come this way. ”My heart was jumping out of my chest and I had a falling sensation. As I entered Dr. Amiraian’s office, I collapsed into the chair facing his desk. He entered the room. Chart in hand. I knew at that moment this was going to be a defining time in my life. One moment in time that would forever change the course of my life journey. Before he even said a word, I knew by his body language what Dr. Amiraian was about to share with me. “Robert,” he said, “you tested HIV-positive.” To this day, I truly believe that it was just as difficult for Dr. Amiraian to send the message as it was for me to receive it.
Okay, the worst just happened. When one chooses the behavior, one chooses the consequences. I now had to deal with the consequences of my high-risk behavior.
Dr. Amiraian went on to say, “Robert, this is going to be a long journey with many hurdles to clear. And you will clear each one that comes your way.” I knew I was in good hands—in my opinion one of NYC’s finest MD’s—and now Dr. Amiraian was not only my primary care provider, he was now my HIV provider as well. At my request, Dr. Amiraian went on to provide an HIV 101 basic explanation of my baseline blood work results, CD4 count at 369 and CD4/CD8 ratio at .46. I asked, what is CD4? What does 369 mean? All these acronyms and numbers, what do they all mean? Dr. Amiraian patiently went on to explain these lab tests and results over and over again until I was able to explain back to him, in my own words, what all this meant. My gut feeling was telling me that these baseline numbers were not good, especially since I had tested HIV-negative six months earlier.
In the 1990s, a CD4 count was one of the few blood tests available to measure the progression of HIV disease. Viral load tests were a new technology being developed as a research tool. HIV treatment recommendations started at a CD4 count of 350 or less. I recall Dr. Amiraian saying that people on average drop 50 CD4 cells each year. I thought 50 per year—that gives me seven years. Will I see 40? The new millennium? At this time, the Centers for Disease and Control’s guidelines were that newly HIV-infected individuals had a life expectancy of about seven years.
This cannot be happening, I thought. Why me? If only I… and so on thoughts were racing through my mind.
Being proactive about my health, I knew that I needed to take the first step—the hardest step—on this journey, right here, right now. Taking control, I asked what, if any, are my treatment options and what are your recommendations? I left Dr. Amirain’s office with a recommended HIV-regimen of antioxidant nutritional supplements vitamin A, C and E as a means to suppress HIV and restore immune function. These served as an extra layer of protection making it more difficult for the HIV virus to penetrate my cells. With basic HIV lab results knowledge, a treatment plan in place, a referral for a therapist, and follow-up appointment three months later, I stood up to exit. As I was leaving, Dr. Amiraian turned to me, looked me directly in the eyes, extended his hand and said, “Robert. I’m here for you. Call me anytime.” I knew he truly meant that. To this day, Dr. Amiraian remains in my life as both a friend and member on my health care team—“Team BELIEVE”—as my HIV consultant if the need arises.
Okay—so I just cleared the first HIV-related hurdle on this journey. The moment I walked out of Dr. Amirain’s office I told myself, I don’t live with HIV, HIV lives with me. My HIV status is not going to define who I am. HIV is just one part of my whole being. My OCD kicked in on overdrive. That’s not Obsessive Compulsive Disorder, but rather my Optimistic, Confident, and Determined the beauty of Central Park, the sun shining down on me, and the cold and brisk autumn weather hitting my skin. Life is good!
Now that I know my HIV status, how do I move forward on my journey of living positive? Do I disclose my status? If so, who do I tell—family? Friends? Employer? Colleagues? Who? And then, once I identify who, how do I tell them? And then once I determined how to disclose, when do I tell? I needed to act fast as in just three days I going home, to Massachusetts, for my BFF/LBS (a.k.a. little baby sister) Micky’s 30th birthday celebration. Even more immediate was what would happen in the next morning. I had to return to the hospital, having crossed over into a parallel universe—living as the children, youth, and adolescents for whom I provide child life care. Although I had no idea whom to, or how to, or when to disclose, I knew one thing for certain: I could not continue on this journey alone. In addition to my growing health care team, I needed my trusted support network, and that meant disclosing my HIV status.