Jan Clemis of Taber, Alta., has celebrated 63 birthdays. But, for the last two years, another anniversary has had a more special place on her calendar. She calls it her Life Day, and it marks the day she received the kidney transplant that gave her a new lease on life. The kidney was a selfless gift from her adult son Blair.
Jan has a form of polycystic kidney disease (PKD) known as autosomal dominant polycystic kidney disease (ADPKD). It is a genetic condition that forced her onto dialysis and left her in need of a transplant to survive. “PKD is a hereditary genetic disorder that primarily affects the kidneys, but it can also affect other organs,” says Jeff Robertson, Executive Director of the PKD Foundation of Canada. “Over time, fluid-filled cysts grow on the organs and cause them to fail. ADPKD is a global disease affecting approximately 1 in 500 people. It’s non-discriminatory, and there’s no cure.”
One family, one illness
Though illness can be isolating, that hasn’t been Jan’s experience with PKD. Speaking with her, she mostly touches on family, love, gratitude, and hope. Because PKD is hereditary, Jan’s family, like many PKD families, has been through the gauntlet with the disease. Jan’s father died due to PKD, as did her aunt, uncle and two cousins, and though her grandmother was never diagnosed, Jan’s pretty sure it took her, too. Jan’s sister, niece, nephew and twin daughters all live with the disease, with only her youngest, Blair, being spared. Today, Jan is a grandmother, and she knows that there’s a fifty-fifty chance that her grandkids will have ADPKD as well.
Still, Jan remains optimistic about the future. In her lifetime alone, she has seen the incredible advances made in PKD care, and she’s hopeful that continued innovation will pave a brighter path for the next generation. “I remember my aunt’s home dialysis machine on her farm in Montana being this monstrosity of a machine that took over her bedroom,” Jan recalls. “Ten years later, my dad went into renal failure and, even in that short time, there had been huge advancements. His machine was able to fit in the closet, and my parents were even able to rig it up in an RV so that they could go on the road and travel.”
Keeping hope alive through generations
Jan’s father died of PKD when he was 58 years old, but to the end, he was an avid believer that research would deliver better health to his children and grandchildren. Jan was 61 when she received Blair’s kidney in 2018, and she shows no sign of stopping. Her father was right. She also wants others to know that early diagnosis today could mean a different path. Early intervention has the potential to reduce the growth of cysts in the kidney and slow the decline of kidney function.
The pace of innovation became very personal for Jan when Blair offered her his kidney. If she took his ‘golden kidney,’ would she be denying him the chance to offer it to another family member down the road? “We had a conversation about how he has two sisters who also have PKD and might need a kidney later on,” Jan says. “But he said, ‘Mom, you need one now.’ It’s heart-wrenching to know that Blair would happily keep giving if only he had more kidneys.”
In the end, Jan accepted Blair’s gift because she was confident in her belief that healthy living and continued innovation would allow her daughters and future family members with PKD the opportunity to keep their original kidneys healthier for far longer. “People with PKD are living longer and living better because we have an improved understanding of the disease and of the factors that can naturally prolong the quality of a patient’s life, like diet and exercise,” says Robertson. “There is so much happening in the field of PKD. People with PKD today have many advantages that previous generations didn’t. There are a lot of people working toward providing the highest level of care and pursuing an eventual cure.”
A new reason to stay healthy
In the midst of a pandemic, maintaining a healthy lifestyle is more challenging than ever, but Jan stays active every day. She’s not going to waste a moment of the extra time Blair has given her, no matter what curveballs the world might throw. “Healthy living has been a part of my life all along,” Jan says. “But now, it has so much more meaning for me to know that I’m taking good care of Blair’s gift.”
Last year, in pursuit of new ways to honour her transplant, Jan took part in the World Transplant Winter Games in Banff, Alta. Blair and her granddaughters were there cheering for her when she crossed the finish line of the 5-kilometre cross-country ski event. Jan smiled at her son and patted her side. “I’m taking good care of it for you,” she said.
In every moment speaking with Jan, she displays her lightheartedness. Still, you can tell that it comes from a place of deep humility and gratitude — gratitude not only for those who have helped her directly in the biggest ways, as Blair has, but also for the wider support of her family, her community, and ongoing research efforts. This sense of indebtedness has nurtured an earnest devotion to paying it forward to other patients and families. “Because it’s not about me — it’s about us all moving ahead together,” she says.
Jan knows that the better future she wants to see for her daughters and granddaughters will only come if we work for it. “I have this faith, instilled by my dad, that investing in research with our time and money will always pay off,” she says. “You have to believe in the science, and you have to help it along.”
If you’re looking for additional resources, the PKD Foundation of Canada is the only national organization solely dedicated to fighting PKD through research, education, advocacy, support and awareness. Please visit www.endpkd.ca to learn more.