A Living Donor's Experience Of Kidney Donation
"Symptoms can be very misleading," says Reggie Barnes of Cooperstown, NY. "My brother Tom would mention a feeling of general malaise for about a year before everything fell apart. We didn't know what it was. Even people who listen to their bodies might mistake a little foamy pee here, and a little of what seems like back pain there. My brother didn't think much of it, and I didn't think of it at all."
No one realized something was seriously wrong until Tom was hospitalized with complete kidney failure. Three weeks later he was released and started kidney dialysis. As months ticked by, it became clear that the kidneys were not going to recover and he was looking at a lifetime of dialysis.
Prospects for the Future
Reggie Barnes has always been close to Tom. Five years his senior and closest in age, he had seen Tom's amazing fight to survive from the time he was born two months prematurely. Reggie loved him for being a survivor from the beginning and has a protective, nurturing bond with him. "I love him to pieces," he explains. "He loves to travel. I was hoping we could travel around together and be as groovy as we wanted to be."
But his brother's condition made that future unlikely, if not impossible. The five year morbidity rate for people reliant on kidney dialysis is high. Due to unrelated conditions, Tom was not a candidate for self-dialysis at home. He spent many hours a week riding the bus across town and then hooked up to a machine in a clinic.
"And he looked terrible," remembers Barnes. "When I saw him like that, I felt a deep dread that he wouldn't make it long."
Deciding to Give Life
Reggie Barnes felt extreme reluctance when the prospect of becoming a living donor first arose.
"I didn't even want to think about it. But I researched. Kidneys from living donors do much better and last longer than cadaver kidneys. If it's from a relative, they do better still. And so it seemed like the solution to a problem, and the loving thing to do."
As tests revealed that he was a match, he started to see things differently. "I'm lucky," says Barnes. "I have beautiful health. I don't take blood pressure medicine. I'm not diabetic. I don't have heart trouble. And as it turned out I had two large, above average performing kidneys. It seemed like, "Why not do it? This is what you do when you love someone."
"I was still like 'What? An organ donor? What is this? An after school special?'" He laughs thinking back on it. "Well, this is my life now."
But living donation isn't the stuff of television melodrama. "Becoming a living donor is increasingly common," says Dr. Christopher Kjolhede, a senior attending physician in the Bassett Healthcare Network and an organ donation advocate.
"Siblings or very close relatives are often a pretty close match. Even when they don't match, there are paired exchange and waiting list exchange programs that allow living donors to help their loved one receive a needed transplant."
Reggie Barnes was the first to say that the donation process is not easy.
"Let's be real," he says. "I did feel different after I gave it away. I had a horrible first night – I got sick and had a migraine. Then a few rough weeks recovering. For a long time I felt tired, weaker somehow. I'm a musician and it was three months before I could play music in public again. The battery was just not charged enough. After almost two years, I'd say I'm at about 95% of what it was before."
But these challenges are nothing compared to the results. "Tom is healthy. His hardy constitution is back. He's working and doing his thing. He got his life back. I was pleasantly surprised by how little follow-up was necessary for both of us. A six month and a year for me, and I was signed off. I consider it a happy ending."
Reggie Barnes understands how difficult the decision is to become a living donor all too well.
"Some people seem naturally geared towards becoming a living donor. Other people are like, 'You are never going to get inside of me and take anything out.' I fully understand where they're coming from. But what I've found is that it is a supreme act of love. It will change you. It was the right thing and I'm glad I did it."
One organ donor could save up to eight lives, restore sight to two people, and heal dozens of others. Visit https://www.donatelife.net/ to learn more and register to be an organ donor today.