Jan Clemis: A Journey of Resilience and Advocacy for Organ Donation
Jan Clemis is no stranger to the challenges of living with chronic illness, diagnosed with Polycystic Kidney Disease (PKD) at just 22 years old. As a kidney transplant recipient, her life has been profoundly shaped PKD, a hereditary condition that has affected generations of her family. But through determination, a supportive community, and her son’s life saving kidney donation, Jan has not only regained her health but has also become a passionate advocate for organ donation.
Here’s her story, told in her own words, with details about her journey, her triumphs, and her ongoing mission to raise awareness for organ donation.
Jan with her children and grandchildren.
Living with PKD
PKD is a genetic disorder that causes cysts to grow in the kidneys, leading to kidney damage and, in many cases, kidney failure. “My dad had PKD, and I watched him face it with determination and a positive outlook. He believed medical advancements would mean I wouldn’t have to endure the same challenges he did,” Jan recalls.
In March 2017, Jan’s kidney function declined dramatically, and she was hospitalized with kidney failure. “The day after my hospital admission, I started dialysis. It was an intense period of my life, trying to heal my body while waiting for the chance to receive a transplant.”
Finding a Donor: A Rollercoaster of Emotions
The process of finding a donor was anything but straightforward. Jan’s son, Blair, initially stepped forward to donate, but early testing showed incompatible antibodies. Her cousin’s son also was tested, but had kidney stones and thus was not a possible candidate. Then, a friend of Jan’s daughter began the donor process but faced the same obstacle.
Jan and Blair started exploring the paired kidney exchange program, but eventually, additional testing confirmed that Blair could, in fact, be her donor. A family meeting was convened, as both of Jan’s daughters also suffer from PKD and will inevitably also need a kidney transplant. Should he donate now or in 30 years to one of his sisters?. In the end the family decided Jan was to be the recipient. “I felt so many emotions—gratitude, guilt, and relief. Blair reassured me, saying, ‘I can save your life now.’ That moment is hard to put into words.”
On August 29, 2018, Jan received her son’s kidney, marking the beginning of her second chance at life. Jan’s Life Day as her family celebrates it.
Life After Transplant
The transplant brought immediate changes to Jan’s life. Before, her health restricted her ability to do many things she loved. “I was constantly driving to appointments and managing my health. After the transplant, I was finally able to return to swimming, something I thought I’d never do again.”
Jan and her daughters at the World Transplant Games!
Today, Jan competes in the Canadian and World Transplant Games, earning an impressive five medals at the 2023 World Transplant Games in Perth, Australia. Her achievements include:
Gold: 50-meter freestyle
Gold: 50-meter butterfly
Gold: 200-meter Individual Medley
Silver: 100-meter backstroke
Bronze: 50-meter backstroke
“Competing alongside others in the transplant community, including my daughters, has been an incredible experience,” Jan shares. “This August, I’ll get to compete in Dresden, Germany. It’s an honour to celebrate organ donation and what it makes possible.”
Challenges Along the Way
One of the hardest moments of Jan’s journey came when her children were mourning the recent loss of their father, Jan’s former husband, who had been a double lung transplant recipient. “I had just gone into kidney failure, and I thought, ‘They cannot lose two parents right now.’ That was an incredibly difficult time for us.”
Jan credits her recovery to her family and community’s unwavering support. “I’ve been fortunate to have the most amazing family and friends. Their support made all the difference, from attending appointments to stepping up as potential donors.”
Advocating for Organ Donation
Jan has dedicated much of her life to raising awareness about organ donation. She has volunteered with the Kidney Foundation for over 25 years and participates in events like the Kidney March, a 100-kilometre walk that raises funds and awareness for kidney disease.
She also emphasizes the importance of policy changes, such as Alberta’s Bill 205, which mandates that healthcare providers refer all potential organ donors to transplant coordinators. “If the question isn’t asked, families don’t get the chance to make that decision. We’re working to ensure no opportunities for donation are missed.”
Breaking Myths About Organ Donation
Jan is passionate about correcting common misconceptions about organ donation. “People often say, ‘I’m too old to be a donor,’ but there’s no age limit. If you register your intent and discuss it with your family, healthcare professionals will assess your suitability. You can still save lives.”
Advice for Others
For those beginning their own transplant or donation journey, Jan offers practical advice:
Advocate for Yourself: “The process can be slow, and you’ll have questions. Speak up and push for answers.”
Find Support: “The Kidney Foundation’s Peer Support program is incredible. Having someone who understands what you’re going through is invaluable.”
Be Patient: “The waiting and uncertainty are difficult, but it is worth it.”
Honouring the Gift
Every day, Jan honours her donor—her son Blair—by living a healthy and active life and continuing to advocate for kidney disease awareness. “As transplant recipients, we honour the organs we were gifted by taking care of them and raising awareness about the importance of organ donation.”
Jan’s story is a powerful reminder of the impact of organ donation. It saves lives, provides hope, and transforms families and communities.
Register your intent and talk with your loved ones. Together, we can make a difference.