As I sit on the dais at Johns Hopkins Turner Auditorium waiting for the press conference announcing the first U.S. HIV positive to HIV positive organ transplants to begin I reflect back to what brought me here. I am not anyone of prominence. I was born and raised in South Baltimore and worked as a teller for many years at the racetracks where I punched out the wagers for customers betting on the races.
I listen as Dr. Dorry Segev, who pushed for the legislation that eventually became the HOPE Act that overturned the outdated ban on HIV organ donors, describe how this has the potential to save many more lives a year, especially for those living with HIV.
Dr. Christine Durand, a part of the transplant team, gives a progress report on both patients of this historic milestone in HIV care, a liver and kidney recipient, who wished to remain anonymous. They both are doing well and their transplanted organs are functioning properly. The kidney patient is home and the liver patient was expected to leave the hospital shortly.
Hearing this is all great news to me. The reason I am at the press conference is because I was asked to recount my transplant journey at the briefing to give a more first count experience.
As I look out at the cameras, I think of that hot summer day in 1987, when I was first diagnosed. I had put off getting tested for too long. Too many friends were testing positive. Too many people I had known from the clubs were either sick or had died. I was 27 years old at the time and while I was working at the racetrack then, I still had dreams of bigger things. People always thought I was funny and I would have liked to have been a comedian. Perhaps a mashup of Jerry Seinfeld and Joan Rivers. Comedy clubs were just starting to get big. But that diagnosed changed me. I was still funny. I didn’t lose that. What I lost was courage. I worried what people thought. Gays were becoming widely accepted by the early eighties. Pride festivals were popping up all over the country. HIV set us back though. A stigma was placed on people with HIV that still gives me shivers. Any blemish, any cough or loss of weight would be a cause of concern. Many believed everyone with HIV would be dead within a few years. Nobody really knew. I decided that I needed to stay in something secure. A union job, that was not too demanding seemed the right way to go, after all, I already had one at the racetrack. Punching out wagers on horse racing would be my future. It wasn’t so bad since I enjoy the races and I certainly made the best of it. I got involved at work; eventually became the chief shop steward. No matter how well liked I was by union or management, I knew that there was no promotion I would accept. Even when protease inhibitors turned my immune health around, then the liver problems began that would lead to two transplants in a span of four days. It is a good thing that I have a sense of humor, because you need it. Some of these treatments have got to be thought up by sadists. You need to put that in where without sedation?
As the press conference draws to an end, I was happy that at one point I managed a laugh out of the crowd. I am also happy with the progress that has been made in both HIV care and with transplantation. I will be happier when there is a cure for HIV. Until then, please consider organ donation, regardless of your HIV status. No one likes to think about dying, but we are all going to do it, and by allowing someone else to live, it truly is the greatest gift to give to another person. Always be safe out there. Even if you are using PrEP, use protection. Don’t be faced with the decisions I had to make when I was young. HIV may be a manageable disease, but trust me it’s not fun to manage it. There are not only side effects of the medicines, but it will change you forever. Don’t think that it won’t.
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