Interviewed by Simi Juriasingani, Ariana Walji, Kaitlyn Foster, Molly Friesen
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.
Part 1 of his interview can be read here.
How did you end up working your way back into cycling after your transplant?
Greg: I’d always done cycling. I’d go out and do 60 miles before the kids got up on Saturday mornings, and I would do century rides, 100 miles, just for fun. At first, I never really did anything about it and then about 10 years before the surgery, I noticed that I couldn’t keep up like I used to be able to. In 2005, we had the World Transplant Games in London and I already knew there was probably a transplant in my future at that point. I went over and watched the Games and that was inspirational. Through the transplant process, that was always in the back of my mind. I think the games are an amazing way of giving people an example and an incentive. That was guiding my recovery because that was that goal.
What was the timeline of when you first started cycling after the surgery? How did you ramp up your practicing towards the games?
Greg: I had the transplant in August 2016. It wasn’t until the next spring that I could think about doing things that were fairly energetic. I started by walking around the block, and then walking an hour every night. And finally, I got back on the bike. I did some rides, and gradually got my strength up. The Canadian Transplant Games were the following summer, in 2018. In the fall of 2017, I started doing indoor spin sessions with a coach. Eventually, he took me out on the road to get ready for the games. I just went out to the games with no expectations and I ended up coming back with a Gold in my age group in Road Race.
Looking back on your journey, is there something you wish you’d known before you got your transplant?
Greg: I think it would be knowing just how long it takes to get the strength back. It still takes a long time to feel good. I’m afraid what happens to a lot of people is that they have a successful transplant, they go out and try to do normal things, and they’re just not strong enough. I think there needs to be more education and more resources available for recovering transplant patients, as far as physiotherapy.
How did you end up getting involved in organ donation advocacy? How did you end up becoming a team lead at the Transplant Ambassador Program?
Greg: Well, I found out about it through a pamphlet and the little cards they’ve got in the examination room. For a while I thought in the back of my mind, “They really need something like this.” So when I read about the program I thought it was really cool. I had just retired too and so I had some time on my hands. I got in touch with them and one thing led to another. A year and a half ago, I started being an Ambassador. I find the program just incredibly rewarding and absolutely necessary.
Could you speak a little bit about what exactly you have done for them in the past? Would you continue to do it in these times of COVID?
Greg: Well, the whole idea behind the program is to educate patients through patient experiences. Unfortunately, the medical people, the doctors and the transplant coordinators, are obligated to tell the patients everything that could possibly go wrong. It can be quite frightening for them. They don’t really get to hear from somebody like me that life can be fabulous afterward. We don’t want to get people’s expectations up if they’re never going to be a candidate. We don’t try to sell them on the idea of getting a transplant. We just tell them about our experience. Now, we’re going to have to do that virtually.
What would you advise someone who wants to get involved in transplant advocacy but they don’t necessarily know a recipient, a donor or know much about the process?
Greg: There are a few really good organizations in London. The London Transplant Gift of Life Association is quite active. We do the Annual Transplant Trot. I’ve gotten to know a bunch of people through such initiatives. Just getting involved in a group like that is good. They can get involved in some of the events.
What would you say to a patient on the transplant waiting list who is looking for a way to hold on to hope?
Greg: Just to stay positive. Just me standing there can be enough to remind them of the way they used to be, and it comes back to what I said before about a lot of them being sick for so long that they forget what it’s like to feel good. My advice to them would be simply to keep the faith because it will get better.