Diagnosed with Reflux Nephropathy as a child, Joanne – Jo – had her left kidney removed at age five. Her family was told that eventually, when her right kidney failed, she would need a transplant.
“I never identified as a sick person,” says Jo. “I had few restrictions growing up, I had a pretty normal high school and university experience, it wasn’t until my early 30s that my health really started to change.”
By 2013, Jo’s kidney function began to deteriorate more rapidly, and the reality of kidney failure loomed closer. Brendan Cahill, her husband, had always known he would step forward to be Jo’s donor – he was determined to do so.
“We knew we wanted to avoid dialysis,” remembers Brendan. “That just wasn’t an option.”
Dialysis performs the most basic function of the kidneys, cleaning the blood. The treatment removes blood from the body and filters it through a machine before returning it to the body. It is time consuming and physically draining. The average dialysis patient spends approximately four hours on dialysis, three times a week.
While dialysis can sustain life for those suffering from renal failure, over the long-term it takes its toll. For those who are fortunate enough to get a transplant after years on dialysis, their new kidney will have a notably shorter life span compared to a kidney that is transplanted into a patient before dialysis starts.
In late 2015, Jo’s kidney function fell below 15% – she was officially a candidate for transplant or dialysis. “I remember taking a tour through the dialysis unit,” says Jo. “I felt sad for the patients who had to spend so much time there, knowing other options might exist. For us, getting to transplant was our focus.”
Brendan began the assessment process. Everything looked promising until the second round of immunological testing, where it was revealed that Jo would be incompatible with 84% of potential kidney donors. Brendan wasn’t a match.
“I was devastated. We really hoped to avoid Jo going on dialysis and being on the deceased donor list, and now those seemed like our only options.” Kidney disease can be disruptive, but end-stage kidney disease brings life to a standstill. For two professionals thriving in their careers, Brendan and Jo felt as if their lives were on hold. To make matters worse, Jo’s physical symptoms, which had been relatively dormant previously, began to ramp up.
“I was itchy and tired all the time. I would still push through, go to work and live my life. When I had a gout flare up caused by my kidney’s inability to properly function, I’d just switch from heels to running shoes and keep going through the pain.”
As Jo and Brendan weighed their options, they were presented with the Kidney Paired Donation (KPD) Program, an option they wish they understood sooner. It wasn’t until they met Dr. Kathryn Tinckam – then Medical Director of the HLA Laboratory and a transplant nephrologist at the University Health Network – that the true opportunity of KPD was explained.
KPD is a national interprovincial kidney sharing program operated by Canadian Blood Services. Simply put, it matches incompatible pairs – like Jo and Brendan – with other incompatible pairs to create chains of compatible donors and recipients. KPD creates chains that frequently span across the country.
“Dr. Tinckam explained the program with so much enthusiasm. She said that if Jo got a kidney from KPD, she would get the best possible match. That’s when I was like, ‘we’re doing this’. We knew we were in the best of hands.”
Reinvigorated, Brendan began the assessment process again. He had slightly elevated blood pressure, which required successful management before he could be considered as a donor. “It was one thing to be rejected because of genetics. It was entirely different to be rejected for something that I could control.”
Calmly, Brendan told his doctors to give him one month. “I trained like Rocky,” he laughs. “I wasn’t going to let my blood pressure prevent me from donating.”
By late 2016, Jo’s kidney function had dropped to 8% – but Brendan was cleared as a donor.
The logistics of KPD are complicated; it requires tremendous coordination and resources. Canadian Blood Services runs their matching algorithm in the Canadian Transplant Registry only three times a year. As of January 2020, 721 transplants have been performed through KPD.
Jo and Brendan didn’t receive phone calls for the first round of KPD transplants in 2017. Brendan’s work requires frequent travel, something that had been restricted through his testing process. Figuring he had three months, he began making travel plans.
In late January, Jo and Brendan received a call. Although the full matching algorithm is run every three months, additional smaller runs may be made as needed to fix gaps or address delays in chains. One of these additional runs had identified a match for Jo.
They debated for a few minutes. “We had planned out the next three months, there was a conference coming up and Brendan was scheduled to travel for work,” remembers Jo. “And then I was like, ‘wait, what are we doing?'” says Brendan. “Yes, we have to do this. Forget everything else.” Their surgery dates were set for mid-February, with Jo scheduled first.
Her surgery went smoothly and the results were instantaneous. Overnight, Jo’s kidney function went from 4% to almost perfectly normal function. “When I woke up after the surgery, I was out of it, but I remember saying ‘it’s gone.’ And the nurse said, ‘what’s gone?’ ‘The itchy feeling.’ It was the first thing I noticed immediately after surgery.”
Knowing that Jo was safe and that the kidney was performing well, Brendan went home. He saw Jo once more, only briefly before heading into surgery himself. He wouldn’t see her again until three days after his surgery, days after his kidney had been flown across the country to complete the chain. Jo and Brendan returned home, their mothers taking turns as caregivers.
“I’ve explained recovery as a second honeymoon before, but it really was. Everything just stopped. It was just the two of us.”
As matched donors and recipients in KPD are often in different cities or provinces, one of the matched pair (usually the donor) often travels to another transplant center. Increasingly, and under certain circumstances, centers are able to ship kidneys between sites allowing donors and recipients to remain closer to home for transplants. In Brendan’s case, his kidney made the journey to Vancouver while he remained in Toronto, close to Jo. “I was prepared to do whatever it took to get Jo her kidney. I would’ve gone wherever they wanted me to. But I’m so grateful it worked out the way it did. Seeing Jo get stronger and stronger was amazing. She was a tornado before,” he laughs. “Now she’s a hurricane, she’s a force of nature!”
In 2018, a year after their life-altering experiences, Jo and Brendan and their families helped to establish the Centre for Living Organ Donation, a world first. Housed within the Soham and Shaila Ajmera Family Transplant Centre (formerly the Multi-Organ Transplant Program), the Centre aims to improve access to living organ donation. Jo and Brendan hope that the Centre helps to change the conversation – from a desperate ask by the most ill, to an immediate offer by Canadians leaping at the extraordinary opportunity to help a loved one.
“The Centre is designed to help patients and their families to inform themselves, and to ask questions early on,” says Jo. “As patients, it’s important we know our options so we can advocate for ourselves and our loved ones.”
“The feeling of being a donor is indescribable. I want everyone to feel it, or at least know that it’s an option,” explains Brendan. “It’s not about being a hero. The chance to experience this is a gift, not a reward. It’s something you are lucky to experience.”
Despite the fact that Joanne received an ideal match through KPD, it is possible that Jo will need another transplant in the future.
“Statistically I probably will, but hopefully not for a long time,” she says. “But it doesn’t scare me. We have a world-renowned transplant program at Toronto General. I’ve been lucky to witness the groundbreaking research and work going on here, and it’s exciting. If I do need another transplant, who knows what they’ll have come up with by then!”