My childhood self would have found this statement impossible to believe, yet now, at 26 years old, living with HIV seems perfectly normal to me. At eight years old in 1991 when I needed corrective eye surgery, routine pre-op blood work revealed I had HIV; testing children for HIV wasn’t standard practice at that time so an unfortunate accident led me to accidentally receive adult panel blood work and reveal my HIV status forever changing my life into “before” and “after.”
Once again, that moment was startling for both my family and medical professionals; now it surprises me when I encounter outdated attitudes that presume those with HIV can’t live healthy lives. At that time I didn’t yet comprehend that HIV should be seen as something shameful or embarrassing; at that age it seemed less such an embarrassment.
Once upon a time, people with HIV were seen only as sick or dead. Today, we can be healthy while sharing that health with those also living with the virus. At age 35 – my 35th year living with an infection acquired through blood transfusion at birth – I passed all physical and psychological tests required of organ donors — including additional ones tailored specifically to HIV-positive people — becoming the first living kidney donor with HIV.
For decades, my actions would have been illegal, but in November 2013, the HOPE Act altered that law, permitting those living with HIV to donate organs directly to other people living with HIV. With proper access and treatment for HIV infection, anyone diagnosed can expect a long and healthy life; medications can reduce viral load (the amount of virus present in blood) to levels undetectable on even the most precise tests.
My kidney recipient remains unknown both to myself and the public at large, though anonymous donation was never my top priority when giving one away to help show that people living with HIV can give life and health to others.
In 2018, my HIV-positive friend needed my kidney. Being one who has long believed they will eventually pass, this experience compelled me to explore donating it; therefore, three times I traveled to Baltimore for medical and psychological exams at Johns Hopkins Hospital before my friend tragically passed before I could be approved as a donor. Unfortunately, however, his death prevented it.
Though I was grieving the loss of a dear friend, my efforts in organ donation did not falter. Soon enough I learned of two other HIV positive individuals needing kidneys – although the pairings didn’t pan out immediately due to being told about organ donations between people with HIV. One later received one thanks to my telling her of this possibility of organ transplants between people living with HIV and me.
As I worked with Johns Hopkins to fulfill my goal – now to donate a kidney – it was no longer for personal reasons or relationships; rather, I did it to show society and the medical world that this could indeed happen.
As someone who had always taken great joy in helping those in need, organ donation felt like an honor and not a burden or sacrifice for me. Although I had been warned of possible physical discomfort or recovery complications associated with organ donation, for me the process didn’t feel any less inconvenient or painful than other medical experiences I’ve encountered during my lifetime.
After my kidney donation surgery at Johns Hopkins, I flew back home to Atlanta where my post-op restrictions were minimal; thus enabling me to run the Marine Corps Marathon seven months post-donation.
As many others with HIV do, I’ve often participated in research studies; my kidney donation enabled me to take part in one that will increase medical knowledge of living longer with HIV.
My hope is that, through these studies, transplantation for those living with HIV will become part of standard healthcare sooner rather than later. Not everyone on a waiting list may want an organ from someone living with HIV; but some will, and should not be denied this choice and be forced to wait their lives out in vain for organ donations from a donor who might also have HIV.
As soon as I discovered I was HIV positive, I assumed my life would end soon and had no future plans. People perceived me through their understanding of my virus. By donating my kidney, however, I turned the tables and turned away from being seen solely through other people’s understanding. Thanks to modern treatments for HIV infection, not only am I free to create any future I want for myself – I can also give someone else that opportunity too.
This resource was produced with assistance from Gilead.
Do you have a Real Women, Real Stories tale that would like to share? Feel free to let us know.
Real Women, Real Stories showcases the genuine experiences of real-life women. Please be aware that any views, opinions and experiences shared through these stories do not reflect or endorse HealthyWomen policies or positions.