Interviewed by Simi Juriasingani, Molly Friesen, Ariana Walji, Kaitlyn Foster
Greg Wilkinson was diagnosed with polycystic kidney disease in his mid-20s. Thirty-five years later, in 2015, he began the process of being worked up for a kidney transplant and it was discovered that he would need a liver transplant as well. Since his surgery in August 2016, he’s become a cycling medalist at various Transplant Games and a diligent transplant advocate. We recently had the chance to speak to him about his experience.
Could you tell me a little about when you were diagnosed with polycystic kidney disease?
Greg: It was a long time ago, I was 26 or 27 years old in the 80’s. At the time, they said, “Yes, you have polycystic kidney disease. It’s a fairly common disease. Lots of people have it. It is probably nothing to worry about.” I was under more active care since about 1991.
When exactly were you told that you would need a transplant? What were your physical symptoms at the time?
Greg: It really didn’t impact my life up until probably about two or three years before my transplant in 2016. I was getting larger, my stomach was growing. It didn’t impact me much, but for about 10 years I had to give up cycling because my stomach was too big. In the summer of 2015, I started having all kinds of iron and hemoglobin issues. I started being a regular visitor at the hospital because, over the years, we had been monitoring my creatinine. The progression is very slow and then, once it gets to a certain point, it gets exponential.
We started the workup for the transplant in the summer of 2015. It was obvious we were headed that way . Then, we started thinking about a donor. The workup went well beside my hemoglobin issue, which made them wonder if it could’ve been leukemia. As it turns out, it was just low iron.
Did you end up on dialysis at all before your transplant?
Greg: Yes. That wasn’t the plan. The plan was to have a living donor and then go ahead and do the transplant. That was supposed to happen in October/ November of 2015. My wife volunteered to be tested as a donor, and it turned out that she was a match. She went through the donor process. But then it turned out that my liver was absolutely enormous. The liver was having trouble functioning, and the size of the liver was making it difficult for all the organs around them. So they decided, “We can’t just do the kidneys, we’re going to have to do the liver as well.” I went on the waiting list for a liver and kidney transplant. I continued getting worse and in February 2016, I had to go on dialysis for six months up until a donor was found.
When did you find out there was a suitable match and how did you feel when you first heard the news?
Greg: I heard four times. I had three false alarms. One time they actually got me started on the IV before they found out the organ wasn’t suitable. The transplant coordinators do a very good job of preparing you for that eventuality. I think that part was harder on my family than it was on me. On the final call, which is August 5th of 2016, they told me to stop eating and get to the hospital.
What was the recovery process like after the surgery?
Greg: It was pretty good actually. I was out of the hospital in 11 days. For a liver and kidney, that’s not too bad. The organs started working straight away and the biggest thing was recovering from the incision.
Was there a lot of pain and management around what type of movement you can and cannot do?
Greg: Yes, and there’s physiotherapy involved in that as well. It really went quite well. There were really no reactions to the medication. I had a mild reaction to one of them, but they discontinued that and I was fine. There was recovering from the incision, and then it was just a matter of getting my strength back. I started walking, which was a bigger challenge than I would have thought. It was just because I had lost all my muscle mass and then things didn’t come back at the same rate. It took the better part of the year to get to where something wasn’t hurting all the time, but it was a good kind of hurt.
I am aware of the fact that transplant recipients have to take medications for long periods of time after the surgery, likely forever. Was that an adjustment for you after surgery?
Greg: No. Not at all. When I do a dialysis shift at the hospital as a Transplant Ambassador, I bring my pill bottle and my dispenser. The number of pills I take now is a lot less than when I was on dialysis. It really doesn’t change much, it just becomes routine.
Are there any other impacts on your day-to-day life right after the surgery or lingering after your physical recovery?
Greg: Yes. The constant little injuries, pulls, and strains were okay. Given the alternative, I could put up with it. The medication was less than anything I had when I was on dialysis. I could sleep at night. I could eat anything I wanted and I didn’t have to be on a salt-restricted or protein-restricted diet. Life was good. I had some colour back and I had my voice back. The recovery was remarkably quick, but maybe I was lucky.
Overall, the impact on your day-to-day life, you’d say has been more positive than negative?
Greg: Absolutely. I’ve noticed that people with health issues forget how good it feels to just feel normal because most of them haven’t felt good in years. That was the big thing, nothing hurt anymore.
How has the pandemic impacted your healthcare experience?
Greg: It really hasn’t. I’ve only missed one nephrology transplant clinic appointment. We did that over the phone. It’s probably changed more with my physiotherapy because I’m doing physiotherapy through video calls now.
Read Part 2 to hear about Greg’s journey toward becoming a cycling medalist and a part of the Transplant Ambassador Program!