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Fall 2021 - Innovation

Live Donor Organ Transplant: A Patient’s Perspective

Headshot of organ transplant patient

WHEN ELDONNA Edwards went back to college at age 48, she never expected her biggest lesson would be one that couldn’t be learned in a classroom. A chance meeting with a classmate suffering from kidney disease started a chain of events that set Eldonna on her path to become a living organ donor. 

It started out as a simple lunch with a fellow student, a chance to compare class notes and simply get to know each other. When the conversation turned personal and the classmate confided she had kidney disease, Eldonna’s curiosity was piqued. “She was a beautiful, intelligent person who contributed a lot in class,” says Eldonna. “After several days of reflection, I decided I wanted to offer my kidney to the student.”

While the woman declined, partly because she wasn’t ready for surgery and partly due to outdated rules at the time that disallowed nonrelated donors at most hospitals, the experience inspired Eldonna to learn more. “Knowing people were dying due to these prohibitive policies prompted me to write a class paper arguing for obvious changes that needed to be made in a broken system,” she recalls. “The more research I did, the more determined I became to be part of the solution — to put my kidney where my mouth was, so to speak. I love this quote from Jane Goodall: ‘You cannot get through a single day without having an impact on the world around you. What you do makes a difference, and you have to decide what kind of difference you want to make.’ I realized that maybe I couldn’t change the world, but I could change one person’s world.”

While writing her research paper, Eldonna stumbled upon a website featuring profiles of patients needing donors. She felt a special connection with one of those people — a hospice nurse and new grandmother — and offered to be tested as her living donor. It wasn’t a match, but Eldonna was undeterred. As she continued her search for a compatible kidney recipient, her story took a series of unexpected turns, and four years later her kidney finally went to a man in his 50s who lived in New Jersey. “In the beginning, I didn’t speak of my kidney donation except to close friends and family because I worried it would move the focus onto me and not on the people on the organ donation waiting list. Eventually, I realized my discomfort was nothing compared to the suffering kidney patients and their families experience on a daily basis. To me, these were the real heroes. By not sharing my story, I’d lose a huge opportunity to educate people about the tragic shortage of organs. In doing so, I’d hopefully inspire altruism in others.”

Eldonna ended up writing a book about her experience titled Lost in Transplantation: Memoir of an Unconventional Organ Donor, and her story was also featured in the documentary “Perfect Strangers” directed by Jan Krawitz. Today, Eldonna travels the country speaking about the importance of living donation. “I’m honored to be a Donate Life Ambassador and to participate on the advisory board for the American Living Organ Donor Fund.” An in-demand keynote speaker, Eldonna also helps moderate Kidney Transplant Donors & Recipients, a thriving Facebook community with more than 11,000 members seeking support and advice, and volunteers to mentor potential donors referred to her by transplant hospitals and other organizations.

For those considering living organ donation, Eldonna advises: “Choose your hospital wisely. You need to feel comfortable with the transplant coordinator. You should feel valued. And make sure they are good communicators who care about you, the donor.” 

For the patients on the receiving end, Eldonna says: “Be an extraordinary steward of your new kidney so you can become a light on the path of those still waiting. Remember, you don’t owe your donor anything. I thought I was going to change someone’s life, but I ended up changing my own. In other words, what started out as a compassionate response to a single individual has blossomed into a far-reaching connection with a multitude of wonderful people who I now call my friends. I have been blessed with deeper meaning and greater purpose in my life. People often thank me for what I did, but in my mind, the gifts I received were much greater than the one I gave.”

Eldonna authored a book about her transplant experience, and her story was also featured in a documentary titled “Perfect Strangers.”

Trudie Mitschang
Trudie Mitschang is a contributing writer for BioSupply Trends Quarterly magazine.