I was the first living HIV-infected kidney donor
I was the first living HIV-infected kidney donor
As told to Erica Rimlinger
I live together HIVand I’m perfectly healthy. That statement would have seemed impossible to my childhood self. When I was 8 years old in 1991, I needed corrective eye surgery and routine pre-op blood work revealed I had HIV. It’s not routine to test children for HIV, but I accidentally got the panel reserved for adults. A mistake revealed my HIV status and divided my life into “before” and “after”.
As shocking as that moment was — to my family and medical professionals — it’s surprising to me now when I encounter the persistent and outdated belief that people with HIV can’t be healthy. I was too young at the time to understand that HIV had to be a source of shame.
There was a time when people with HIV were considered sick or dead. Today we can be healthy and we can share our good health with others who are also living with HIV. At age 35, which was my 35th year of living with HIV that I received from a birth blood transfusion, I passed the rigorous and extensive physical and psychological tests required to donate an organ, as well as some Extra medical hurdles put in place for HIV-positive people only. And then I became the first living kidney donor with HIV.
For decades, my actions would be illegal. But in November 2013, the HOPE Act changed that by allowing people with HIV to donate organs to other people with HIV. The fact is, with access to and stay on effective care, a person diagnosed with HIV can expect to live a long and healthy life. This is largely due to drugs that can reduce our viral load – or the amount of virus in our bloodstream – to levels so low that even the most precise tests cannot detect it.
The person who received my kidney remains anonymous to both the public and me. While it is true that I wanted to donate a kidney to demonstrate that people living with HIV can give health and life to others, an anonymous donation was not my first choice.
In the summer of 2018, a friend with HIV needed a kidney. Having grown up believing I was going to die, the situation prompted me to consider donating my spare organ. I went to Baltimore three times to undergo medical and psychological tests at Johns Hopkins Hospital. Unfortunately though, my friend died before I could donate.
I was saddened by the loss of my friend, but I didn’t let it deter me. I had already invested time and energy in the donation process and soon learned of two other people with HIV who needed a kidney. Those pairings didn’t work out, but one of those people later got a kidney because I told her about the possibility of organ transplants among people with HIV.
I continued to work with Johns Hopkins. As I moved towards my goal, which had now moved to donating a kidney to someone else, I wasn’t doing it to connect or build a relationship with another person or family, but simply because I wanted to – and because I wanted to show the medical world and society that could be done.
I also felt lucky to be able to offer help to someone in need. For me, organ donation is a privilege and not a burden or a sacrifice. I had been warned of the physical pain and recovery involved, but for someone who has spent her life in healthcare practitioners’ offices, the process seemed no more or less uncomfortable or painful than my other medical experiences.
2019 (photo/Sarah Marie Mayo)
After the donation operation, I left Johns Hopkins and flew home to Atlanta. My post-op restrictions were minor, and I recovered quickly: I ran the 2019 Marine Corps Marathon seven months after donating my kidney.
Like many others with HIV, I have often participated in research studies, and donating kidneys has allowed me to participate in a study that will increase medical knowledge of the longer life of those living with HIV.
I hope that, thanks to these studies, transplants for people with HIV can be accepted as the standard of care sooner rather than later. Not everyone living with HIV on a waiting list will want to use an organ donated by someone who is HIV positive, but some will – and they shouldn’t be denied the option and have to die waiting.
From the moment I knew I was HIV positive, I believed I was going to die and have no future. I have been “altered” all my life and seen through the lens of other people’s understanding of my virus. By donating my kidney, I turned the tables on my “otherness”. HIV treatment has come so far that not only can I continue to create the future I want, but I can also give someone else the opportunity to create their own future.
This resource was created with support from Gilead.
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