One PKD Patient’s Journey to the 2023 World Transplant Games
It felt like 50 years had melted away, and I was 15 years old, crouched low on the starting block, and waiting for the race official to give the command, “Swimmers take your marks….. BEEP!” And then we dove! We were from Canada, Australia, Great Britain, USA, Israel, Brazil…… All over the world- there together in Perth for the World Transplant Games (WTG)2023. We came from all across the globe to celebrate our good health, our fitness, our love for athletics, and most importantly, to celebrate the “Gift of Life” our donors had given us.
Hi- I’m Jan Ehlert, from Taber, Alberta. I was diagnosed at age 22 with polycystic kidney disease. I inherited it from my dad, who carried the gene from his mom. There are 12 people in my immediate family, who were/are affected with PKD; including my two daughters, Bonnie and Carli. Our family has embraced the belief that research will guide us through this disease and shine a much brighter light on families affected in the future.
The most memorable aspect of the week April 14-21 was that I was accompanied to the Games by my amazing daughters! Sharing the experience with them was fabulous, and they too were able to participate in the “Donor Family” category, as their brother was a donor, their dad had received a double-lung transplant in 2014, and I was a kidney transplant recipient. Athletes are divided into 3 categories for the various athletic events- recipients, living donors, and donor family members. Athletes ranged in age from 4 to 84, were from 45 different countries, and they participated in over 50 different sporting events.
Being surrounded by 1500 athletes who shared the gratitude and gratefulness for a healthy life that can be achieved post-transplant “made my heart happy!”. There was a groundswell for every participant to achieve their personal best. We had a feeling of camaraderie rather than competition. Before events, we were asking “What organ did you receive?”, “How long out are you from your transplant?”, “Have you ever been to a WTG before?” There was a common thread of thankfulness for transplantation, but every athlete’s story was unique.
Our week was filled with training sessions and competitions. My events were all swimming, including 50M butterfly, 50M backstroke, 50M freestyle, 100M backstroke and 200M Individual Medley. Bonnie and Carli competed in 5KM run, 100M sprint, 3000M Racewalk, Pe`ntaque, 50M freestyle, and the 4x100M relay. Cheering on our 25 Team Canada Athletes was so exciting! Our youngest team member was 12-year-old Addison McArthur, who received a heart transplant when she was 3 weeks old…. She is a healthy, fun-loving girl whose family embraces each sunrise with gratitude for Addison and her heart donor. We had many supporters also come to Perth; our Canadian contingent numbered 39 in all!
Athletes could choose any 5 of over 50 different events to participate in, including lawn bowling, darts, golf, swimming, athletics, badminton, table tennis and more. With such a variety to choose from, it makes the WTG very attractive to a wide variety of athletes, and gives them an opportunity to try something new! Bonnie and Carli had never even played pe`tanque or done the 3000M racewalk prior to the Games, but they both took home medals in their events!
As a team, Canada excelled with our small but mighty group! Of 45 countries, Canada placed 11th for Adult Recipients, 5th for Junior/Youth Recipients, and 1st for the Living Donor/Donor Family! Together, our 25 athletes brought home 21 Gold Medals, 18 Silver Medals and 19 Bronze Medals. Most importantly, we formed friendships and bonds between athletes across our provinces. Lifelong connections will entice us to return to another event!
In addition to all the sporting events, there were several other inspiring and entertaining activities offered during the week. The Parade of Athletes and Opening Ceremonies kicked off the week together at the remarkably impressive Optus Stadium in Perth. Featured was the world premier of a song written by Rose Parker- “Because of You”- as a tribute to her brother, who died a year ago and donated his organs to save others. The guitar player in her band was a liver transplant recipient as well! Most moving, was that after all the guests, supporters and organ transplant recipients were seated, the last to enter the stadium were the living donors and family members of deceased donors (we call them “Angel Donors”). They were honoured with a standing ovation and not a dry eye was to be found. Each recipient was struck with gratefulness of the “Gift Given” to make it possible for us to attend, to be healthy, thriving, and able to bring awareness to the need for more organ donors around the world.
The WTG Organizing Committee also organized a Service of Remembrance & Thanksgiving, a Donor Beach Walk, a Cultural Night, Closing Ceremonies and Gala. For the youth who participated at Perth, they had Family Day Out, Art & Crafts for Kids, Kids Night In, and Kids Novelty Sports and Games. 86 Youth (ages 4-17) participated over the 6 days of competition. Over 400 volunteers made the entire week possible, from directing traffic to officiating at the events. What an incredible endeavor!
The WTG are the perfect opportunity for a spotlight to be shining on the incredible, healthy life that can result when people register their decision to become an organ donor. Far too many are waiting on transplant lists all over the world. Hopefully this event encourages more registrations and family discussions about creating a culture of organ donation, and for donation to be the default when someone passes! Here in Canada, the oldest organ donor was 92 and the oldest tissue donor was 104! Never let anyone tell you “No one would want my organs!” It just isn’t so!
Attending the World Transplant Games became possible when I received a kidney transplant from my son, Blair (who luckily dodged the PKD bullet) on August 29, 2018, which I now refer to as my ”Life Day”. After being on dialysis for only a year and a half, the freedom from a restricted diet, the limits to activities and the time commitment to travel nearly an hour each way to Lethbridge for dialysis three days a week came to an end when my “Ginger Son” donated a healthy “red-headed kidney” to me! A family confab was held to discuss whether Blair should “save his spare kidney” for one of his sisters, as they also unfortunately face the need for a transplant in their futures. As my situation was current and pressing, Blair unselfishly decided to be tested and was my match. Our family also holds out hope that in another 25 years when Bonnie and Carli need a transplant, perhaps they can clone a new kidney, transplant a pig’s kidney, or create a 3-D kidney! With research going in so many different directions, we believe there may be options available to the girls that my dad and I didn’t have available. Organizations like the PKD Foundation of Canada are working hard to make progress in the lives of every PKD patient across our country. Following the webinars, newsletters and conferences offered by the PKD Foundation of Canada gives us all hope!
Every 2 years (odd numbered years) a Summer WTG is held, and on alternating years (even numbered years) a Winter WTG event is held, somewhere around the world. Banff, Alberta hosted the WTG20 immediately before the pandemic broke out. Bormio, Italy is slated to host the WTG Winter Games in 2024. Dresden, Germany is scheduled to host WTG Summer Games in 2025. Anyone interested in attending can go to the World Transplant Games website and seek information here.
The Canadian Transplant Association (CTA) also hosts a “Canadian Transplant Games” every two years. They are a premiere athletic celebration of sport for transplant recipients, living donors and donor families across Canada. Every athlete and skill level is welcome. Due to the pandemic, they were last held in Vancouver, BC in 2018. The next Canadian Transplant Games are slated for August 2024 in Ottawa. Hopefully some of you will consider attending! More news about this event will be posted on the CTA website.