National Donor Day: My Transplant Story

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Published on February 14, 2022 | Retired nephrologist Greg Zollner, M.D., knows the ins and outs of kidneys. So, imagine his shock when a routine day in the office ended with his own surprise ADPKD diagnosis. In honor of National Donor Day, Greg’s sharing his transplant story and his gratitude for the friend who made it possible.

I was five years into practice as a nephrologist when I found out I had polycystic kidney disease (PKD). I really enjoyed nephrology. My practice, with one other doctor, was close to my wife’s family and her pediatric office. I felt both challenged and fulfilled by my job. I didn’t know of any kidney disease in my family.

After office hours one evening, an ultrasound technician I knew from the hospital brought a portable ultrasound machine to the office to demonstrate. We were considering having ultrasounds done in-office since we ordered a lot of them. My partner and I were there with the technician. A volunteer was needed so I hopped up on the table. When the probe touched my abdomen, we all saw liver cysts immediately. Scanning lower, there were multiple cysts in both kidneys to the extent that they were enlarged. Before exchanging words, all three of us knew that the diagnosis was ADPKD and polycystic liver disease.

I was in shock and went through a period of depression and mourning. I was mourning the loss of my self-image as a person free from chronic disease. Eventually, I convinced myself that I may never reach end-stage kidney disease and life went on. Over the next 20 years, our nephrology practice grew to include four doctors and a nurse practitioner.

My PKD Journey

During this time, my kidney function slowly deteriorated. I eventually realized I needed my own nephrologist, and I made contact with Terry Watnick, M.D., now at the University of Maryland, and later with Simin Goral, M.D., at the University of Pennsylvania. They provided me with outstanding care. I participated in some of the tolvaptan trials and other clinical research. I also attended some PKD Foundation events and an annual meeting.

Many times when seeing patients I wanted to share my diagnosis as a way to connect. I identified very strongly with many of them. I’m sure some would have welcomed this information and we would have bonded over it. However, I never did share because I felt it would make the visit about me whereas the focus needed to be on the patient.

I did share my diagnosis with my partners and some colleagues. One of my partners, Chris Frankel, told me he would give me a kidney at the right time when I disclosed that I had ADPKD. I thought that was a lovely sentiment to express, but I didn’t really take him seriously.

Choosing the Path of Transplant  

I had to go on disability when I reached stage IV chronic kidney disease. My kidneys were so large that breathing and exertion were difficult. I had sleep apnea and acid reflux caused by the large size of my kidneys, along with back pain and swelling in my feet. Stopping work was a heartbreaking decision for me, but it allowed me to focus on my health. And then I went on the transplant list.

Two years later, I reached stage V chronic kidney disease, and it was time to look for potential donors. I was overwhelmed and humbled by the response from my family and friends who stepped forward to be evaluated. Chris was among those who volunteered, but again I didn’t anticipate that he would be identified as the best candidate. Most of his workup was done before I was even aware he was a match.

My Transplant Procedure

In October 2020, I underwent a ten-hour procedure in which my kidneys, weighing 30 pounds in total, were removed and Chris’s kidney was implanted in my abdomen by Dr. Peter Abt. The team at the University of Pennsylvania was fantastic, working during the Covid-19 pandemic and before vaccinations were available. The kidney worked right away. Chris recovered quickly and was back to work and to his regular pattern of exercise within a few weeks. It took me quite a bit longer to recover, but I am doing well more than a year later. After my transplant, I decided to officially retire from medicine.

The story of a nephrologist giving a kidney to another nephrologist was unusual enough that Channel 6 news in Philadelphia did a brief clip about us after a receptionist in our office called a reporter. I wasn’t able to see Chris very much over the first year because of concerns about Covid-19 and isolation, but our families have since seen each other several times. He has taken part in panel discussions on living donation. His act of donation became well-known in the local community and he has been rightfully praised by many people. He can now speak to potential kidney donors with powerful authenticity.

 

Thinking of the Future

I have been incredibly fortunate. I was able to avoid dialysis and I had a suitable donor. There are many many people I know with ADPKD who’ve suffered far more than I did, and one of my children has ADPKD. I am looking to the future. I firmly believe there will soon be new and effective treatments to prevent the progression of ADPKD and other cystic kidney diseases. For the people who need dialysis, these treatments will improve and there will be better quality of life. There are exciting innovations in the area of transplant as well. I’ve seen how many people who are faced with the opportunity to truly change someone’s life profoundly respond with a most generous gift of organ donation.

 

Supporting National Donor Day

National Donor Day is a great time to share your story and to find out more about kidney transplantation. To learn more about living donations, you can also check out our recent webinar on the topic.

3 Comments

  1. Mary Arredondo

    Was your dx a spontaneous mutation? How is your liver? My daughter’s dx was spontaneous mutation and it was devastating. Her liver has taken over internally and she has trouble breathing. Why do they allow them to suffer? I am so glad that you are doing well. It’s tough finding a good nephrologist here in San Diego

    Reply
  2. neriman

    I was a patient of Dr. Zollner and went to dialysis 7 years in this dialysis center. I also have a PKD in my liver and kidnet. in 2014 I had got kidney and liver transplant by Dr. Abt. I am currently seeing Dr. Goral for my routine check up. I am very happy to hear your are doing good and got transplant. I am very thankful to you during the time I was in dialysis and helping me to sign up for transplant list. I am also very thankful to Dr. Goral and Dr. Abt for everything they have did for me.

    Reply
  3. Patrick Knowles

    We all need stories like Dr. Zollner and Frankel in the PKD Community!
    My father used to talk to my brother and I about the care and compassion he received from Dr. Zollner all the time. He was a confidant and someone that gave him great hope.
    Imagine my surprise moving back home to PA from 20 years in Northern California when I walked into my first nephrologist appointment to shake the hand of Dr. Frankel!
    PKD can often seem like an illness of solitude and isolation…but this story reminds me, when I feel alone with my own PKD diagnosis, about the interconnectivity of this community and how we can continue to pass hope along to the next person in need. My dad would have really gotten a kick out of this! Thank you guys for fighting the good fight.

    Reply

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