āYou have kidney disease,ā my doctor told me in a flat, emotionless voice that contrasted with the turmoil I was feeling.
I hadnāt been to a doctorās office in nine years. I was there to get checked out after my family noticed ā literally saw ā my heart thumping in my chest while we watched a football game.
āWait a minute, can I die from this?ā I asked the doctor. Without giving me a straight answer, he referred me to a nephrologist ā a specialist who treats diseases and conditions that affect the kidneys.
It was 2002 and I was trying hard to build the perfect life. I had a great career as an administrative staffer for the School of Public Health at the University of Pittsburgh. I lifted weights, walked half-marathons and played flag football, basketball and softball in local leagues. I was 34 years old and the father of a toddler son, with a second child on the way.
After all that effort, I found myself alone in that doctorās office, wondering if my children would grow up without a father.
At the time, I didnāt know that kidneys ā organs about the size of your fist ā are essential for keeping our bodies healthy. They filter our blood by removing waste and excess fluids. They also regulate our blood pressure and keep our electrolyte levels in check.
But my kidneys werenāt working properly: I had glomerulonephritis, which is inflammation or scarring of the kidney filters. My nephrologist told me my kidneys would gradually lose function over time. I could stave off kidney failure by starting dialysis ā a treatment that uses a machine to clean your blood because your kidneys canāt. Eventually, I would need a kidney transplant.
āWait a minute, can I die from this?ā
But kidney disease isnāt a death sentence, he said. As long as I kept up with my treatments, I could live with this.
Reassured by what my doctor told me, I tried to move on with my life by raising my kids, building my career at Pitt and staying active through sports and exercise.
But my symptoms were overwhelming. I couldnāt keep up with my flag football teammates during games. I chased after 30-yard passes, but got winded easily. I stopped to catch my breath in between plays. Sometimes I was too exhausted to play defense and found a substitute to take my place. I went home after games and slept for more than half the day. It didnāt matter how much rest I got; I was always tired.
A new lease on life, but it didnāt last
I was about to start dialysis when my sister, Nickey Collins, said sheād give me her kidney. I refused her offer at first, but she insisted and got tested to find out if she was a match. She was a compatible donor, which is likely because weāre related: Sibling donors have a 25% chance of being an exact match to their recipient.
I received my sisterās kidney in 2007, which boosted my quality of life for seven years. I stayed off dialysis, which meant I had the freedom to travel and lead an active life. I married Christine, and together we built a family that includes six children. I even walked two half-marathons in the same week, though I felt terrible afterward and wondered if I had pushed myself too hard.
By 2014, those familiar feelings of weakness and exhaustion had returned. Doctors confirmed what I could feel: My sisterās kidney ā which was small and had to work harder in my body ā was failing. I needed a new transplant right away.
I felt like my wife had gotten a bad deal. We were newly married when I lost the ability to do fun, active things with her. She became my caregiver and took on more than her fair share of the housework and childcare. āHowās George?ā people asked her. But no one asked how she was doing. On top of my own suffering, I found it so painful to watch hers.
Desperate to improve our lives, my wife offered to give me her kidney. Blood tests showed she wasnāt a match, but she found another option: a program called kidney paired donation, which allows two incompatible donor-recipient pairs to swap their living donors. It works like this: My wife would donate her kidney to a recipient in California. A donor in California would send their kidney to a recipient in Massachusetts. And a donor in Massachusetts would send their kidney to me.
What to expect when youāre transplanting
My wife and I had surgery on the same day in 2016.
We rose at dawn and headed to UPMC Montefiore. They prepped us for surgery in different rooms, inserted our IVs and gave me a cocktail of medication. My wife had surgery first and was transferred to a recovery room. She woke up just before they took me to the operating room.
Still groggy from the anesthesia, she asked to see me before my surgery. The surgical team initially refused, but relented when she āstarted having a fit,ā as they told me later. I donāt know how she convinced them to change their minds, but they wheeled my hospital bed alongside hers so she could kiss me and tell me she loved me. The team told me to count to 10 as my own anesthetic took hold. I made it to four before everything went black.
Hours later, I woke up in a fog and had no idea where I was. I heard people calling my name as I was coming to, but couldnāt figure out where their voices were coming from. Someone pulled tubes out of my nose and mouth and handed me a button-controlled pain-relief pump.
Nurses told me Iād be on immunosuppressive medication for the rest of my life. I needed the drugs to keep my body from rejecting my new kidney. They explained which pills to take at which times, which foods to avoid and how to take care of myself overall. This was my second transplant, so I knew the deal.
My wife and I went home together. The recovery process was harder on her than it was on me: I received an organ I desperately needed and felt better. She lost an organ and was in a lot of pain. When I was strong enough, I helped my mother-in-law to take care of her while she recovered.
My wife had a laparoscopic nephrectomy ā a process that involves removing an entire kidney through a few keyhole incisions. My transplant surgeries, on the other hand, required long incisions across my abdomen. Her scars are barely noticeable, while mine are each the size and shape of a small banana. My scars donāt bother me when I see them while showering or getting dressed; Iām too grateful for my transplants to care about how they make me look.
An unexpected complication
About a year after my second transplant, I noticed that my vision was getting worse.
At first I thought I needed glasses due to normal, age-related changes. But I walked past the Cathedral of Learning one day and thought it looked wavy ā like a transition to a dream sequence in an older film or TV show. I realized something was very wrong as I struggled to bring the building into focus; I couldnāt chalk it up to my aging eyes anymore.
Not long after that I received an urgent phone call from a nurse at Montefiore. āYou need to come in right away,ā she said.
I was doing a virtual 5K at the time, but stopped halfway through to go to the hospital. I arrived, still sweaty in my running clothes, and met with doctors who told me that my second transplant donor had likely been infected with cytomegalovirus [CMV]. Most people never develop symptoms, but I was on immunosuppressants and couldnāt keep the virus in check. Its effects can range from flu-like symptoms to death. Now blood tests showed it was replicating in my body and attacking my eyes.
Doctors tried antiviral medication and other conventional treatments. Nothing worked, so they tried an experimental treatment called T-cell therapy ā an infusion of immune cells that specifically target CMV. I was one of the first patients in the Pittsburgh region to receive this treatment, which has since been approved by the Food and Drug Administration.
It worked; CMV is undetectable in my body now, but not in time to save my sight. The virus damaged my retinas to the point of peripheral vision loss. Iām now legally blind and on long-term disability leave from my job at Pittās School of Medicine.
The downside of receiving T-cell therapy as a transplant patient? I had to stop taking my immunosuppressants for it to work, which led to kidney failure. I needed another transplant, which was kindly given to me by Renee DiNuzzo, who learned about my situation because we both went to the same gym. She had been trying to donate a kidney for a long time, so sheās even happier about it than I am.
The risk of developing CMV isnāt a good reason to avoid a kidney transplant. Antiviral drugs will work for most transplant patients; they just didnāt for me, so my experience shouldnāt stop anyone from pursuing a life-saving surgery.
Finding a new calling
I was in a dark place because I couldnāt work. I had nothing to do, so I sank into a depression and lashed out at those closest to me.
āYou have to do something,ā my wife said. āYou just need to go out and help other people.ā
I thought about how I urged a friend with cancer to advocate for herself when doctors refused to consider her for transplant surgery. I told her to fight for a kidney because she deserved it, that someone was out there ready to donate to her. She took my advice and successfully advocated for a transplant. Her new kidney improved her quality of life for some time, though she eventually succumbed to cancer.
What if I could do that for more people?
I approached the National Kidney Foundation and told them I wanted to support their mission. Intrigued by my story, they invited me to join the local board of directors in Allegheny County.
Now, at 54, I work to dismantle structural inequalities in kidney care, dialysis and transplantation. Black people like me are four times more likely to develop kidney failure than white people, but are much less likely to receive a life-saving transplant. Kidney disease is on the rise in the United States: More than 37 million people suffer from it and nine out of 10 people have no idea they have it.
āSome people die waiting on a kidney, while Iāve received three in less than 20 years.ā
I do my part by going out to community events and connecting with folks ā including those who look like me ā to spread awareness of kidney disease. Word spread quickly and now people send their friends and family to me so I can advise them and point them to resources as they pursue treatment and transplantation.
I hope to teach young people to watch out for signs of kidney disease in themselves and their family members. I want to share lessons from my own youth, when I rarely went to the doctor and ignored the high creatinine levels ā a sign of kidney problems ā that blood tests flagged when I was 25.
I do all this because of a fact that torments me: Some people die waiting on a kidney, while Iāve received three in less than 20 years. I respect the kidneys that I have and hope Iām putting them to use by helping others.
George McClure is a member of the board of directors for the National Kidney Foundation Serving the Alleghenies. He can be reached at georgecmcclure@gmail.com.
Venuri Siriwardane is PublicSourceās health and mental health reporter. She can be reached at venuri@publicsource.org.
This reporting has been made possible through the Staunton Farm Mental Health Reporting Fellowship and the Jewish Healthcare Foundation.
