Being a gay man in our society has it's own set of challenges. Being an HIV-positive gay man has even more challenges. But being a gay HIV-positive man requiring a heart transplant in our current culture presents challenges that are nearly insurmountable.
It has been four years now. Four years since I was admitted to a small Florida hospital. Admitted because the results of a full-body CT-Scan revealed that my heart was abnormally large -- twice the size that a heart should be under normal conditions. The medical staff was baffled. Although I had been, at that time, HIV-positive for 17 years, I had never presented with any opportunistic infections. I had been medication compliant, exercised, and did everything within my power to stay as healthy as possible. Blood work results were always great. So how is it that an outwardly healthy and happy 44-year-old gay man suddenly goes into congestive heart failure?
Subsequent tests revealed the possible culprit, Coxsackie B virus. Coxsackie what??? Who had ever heard of such a word? Then a doctor mentioned that it is commonly referred to as 'hand, foot, and mouth disease.' Ah, a light bulb then went off in my head. I was the director of a private, church-based school where we had an outbreak of the illness, primarily affecting our younger children, six months prior. I recalled coming down with flu-like symptoms during that period, but not showing the telltale spots on the various parts of my anatomy for which the disease is named. Some of the hospital physicians were convinced we had found the culprit, and some were skeptical -- asserting that it was a combination of Coxsackie and HIV, or it was just the HIV. Regardless, one thing was for sure; viral myocarditis had led to congestive heart failure.
The experience leading up to my heart transplant is a blur of unsuccessful interventions: Ineffective medication therapy, the implantation of an improperly programmed pacemaker/defibrillator that caused thirty misfires over the course of two days, an IV-sepsis in my left forearm, three pulmonary emboli, and an unnecessary ablation of my heart (any one, in and of itself, capable of killing me).
My family and I were told I probably had six-months at best to live. After all, there was not a major health center in Florida that would "touch my case." HIV was an exclusionary criterion for more advanced therapies such as an LVAD (heart pump) and of course, a heart transplant.
It was at this point that I was at my lowest of the low. My hospital bed at that time was in a room close to the nurses' station due to the precarious nature of my case. One morning, two of my doctors had just finished evaluating me. They had left the room and routinely sat down at their computer stations to type their medical notes. I could easily hear their conversation. I heard one doctor say to the other, "Oh well, he brought it upon himself."
Those callous and toxic words cut through my soul. Not only because they were insensitive and unprofessional, but also because they brought back memories -- painful memories. I had been an Army Officer in Germany and later during the Gulf War. These were in the days before "Don't Ask, Don't Tell." The days when suspected gay establishments near any base were blacklisted and Army CID actively sought out violators of the policy. I had seen more than one gay soldier drummed out of the service, but one was especially difficult. One day, a sergeant friend of mine had been dishonorably discharged because he had been "caught in the act." He was popular within our unit. I distinctly recall his "walk of shame" out of the front doors of HQ. I turned to a fellow lieutenant and remarked about how sad it was. My "friend's" response was, "... he brought it upon himself."
The fact is, people with HIV infection are now living longer and dying less frequently from AIDS-related complications, but are increasingly experiencing morbidity and mortality that is secondary to organ failure.
Despite this, there has been no systematic comparison of outcomes between HIV-negative and HIV-positive patients. However, published reporting of transplantation in HIV-positive patients who are receiving multidrug, antiretroviral regimens has concluded that, in most cases, HIV infection does not affect the outcome of the transplantation.
Additionally, there are several unpublished reports of favorable outcomes years after transplantation in
HIV-positive patients receiving antiretroviral therapy. There is also increasing evidence that immunosuppression may have beneficial effects in people with HIV through moderation of immune activation and reduction of "HIV reservoirs." This, many would argue, is further justification to lift the ban on transplanting HIV-positive organs -- thus, shortening waiting times for HIV-positive recipients or even allowing access to transplantation for many patients who would have normally been denied. Certain immunosuppressant drugs also have antiviral properties or interact in synergy with certain antiretroviral agents.
ABC News' cameras were there filming every step through my transplantation process, which brought me to NewYork-Presbyterian and Hartford hospitals -- two facilities on the cutting-edge of providing advanced care and research to HIV-infected organ transplant recipients.
I hope that my experience can somehow make the story of those who follow me smoother and their access to quality medical care more readily accessible. After all, I did not "bring it upon myself" anymore than my friend the Sergeant did back in my Army days. A person who has controlled-HIV should be no more excluded from transplantation than somebody with controlled-high blood pressure, because controlled-high blood pressure never precluded anyone from the transplant list.