DISRUPTING ORGAN DONATION ONE COUPLE’S JOURNEY BY LISA SADACH

When Joanne Kearney and Brendan Cahill began their relationship more than a decade ago, neither would have thought that their bond, along with innovative advancements in Canadian medical technology would set into motion a series of life-changing surgeries across Canada.

HAVING MET RIGHT AFTER COLLEGE, JOANNE AND BRENDAN WERE FRIENDS FOR SEVERAL YEARS BEFORE THEY BEGAN DATING. Like most young couples, the pair grew their careers and lives together, eventually getting married and making plans for the future. However, unlike most young couples, they suspected they had an uncommon problem to face on the road ahead. At only 4-years old, Joanne was diagnosed with kidney disease resulting in the loss of one kidney. Thanks to strong patient care at Toronto’s Sick Kids and Toronto General Hospital, the other organ continued to partially function, but she often wondered if she was living on borrowed time. Having lived with the disease most of her life, Joanne worked to maintain her health. For almost thirty years the progression of the disease was slow and required very little extra attention from the couple and, as Brendan said, she’s “…amazing. Jo-Jo is still Jo-Jo.”

DESPITE THE SLOW PROGRESSION AND PROACTIVE MANAGEMENT OF JOANNE’S HEALTH, THE DISEASE BEGAN TO ACCELERATE EXPONENTIALLY IN 2014. At this point, the biggest change, according to Joanne, was a new specialized diet; one which seemed opposite to traditional “healthy” diets. "Suddenly you can have all the white bread and pasta, but typically healthy foods like avocados and tomatoes are no longer an option.” These foods contain high potassium levels which the kidneys are no longer able to process leading to a chemical build-up in the blood and possible hyperkalemia, a condition marked by nausea, weakness, and a slow pulse. After only a few years into their marriage, by late 2015, despite the modifications to diet and other medical efforts, Joanne’s kidney function had fallen below 15%, making her a candidate for a transplant or dialysis. For Brendan, the solution was obvious. “Of course, it would be me who would donate, of course,” a sentiment he had expressed since first learning of her illness when they began dating years before. Joanne tried to insist that it didn’t need to be Brendan’s burden alone; luckily many of her family and friends were willing to be tested for compatibility.

INITIAL TESTING TO SEE IF BRENDAN WOULD BE A MATCH TOOK A FEW MONTHS, AND, SURPRISINGLY, THOSE RESULTS WERE POSITIVE. Joanne describes this time as focused on hoping and planning for things based on Brendan being a good candidate. However, upon the second round of immunologic testing, it seemed the couple would not have a straightforward solution as they received word that the new tests revealed Joanne’s body was now unlikely to accept a new kidney from 85% of available donors, including Brendan. Many of Joanne’s family members also went through the process of testing during this time, but no suitable direct matches were found.
As the news sank in, they reluctantly looked into dialysis as a treatment and considered adding Joanne’s name to the traditional deceased donor list, or just The List – a wait that can take upwards of seven years with many perishing before a match is found.

UNTIL THIS POINT, THE YOUNG COUPLE’S DAILY LIVES HAD BEEN LARGELY UNTOUCHED BY THE DISEASE AS THEY CONTINUED THEIR INDIVIDUAL AND SHARED PURSUITS. With dialysis, however; there would be a major lifestyle change as daily treatments would take up time and energy. Even more importantly, patients who receive dialysis before getting a transplant can be more likely to experience complications with a rejection of the new organ. There was also a possibility of death while on dialysis even higher than on chemotherapy, a fact few talk about when considering kidney disease treatments.
The hard fact is that most kidney failure patients end up on dialysis and waiting on the list if they can’t readily find a donor among their immediate family and friends – and they often have to make the ask at the worst time, when they are in deteriorating health. Or some are even unwilling to make the ask at all.

BROADENING THE CIRCLE
As the couple began to resign themselves to the realities of dialysis, a third option was presented: The Kidney Paired Donation program (KPD). Directed by the Canadian Blood Services, KPD works to match people like Joanne and Brendan to other people who need kidneys and those who are willing to donate but who aren’t a match for their loved ones. In effect, it acts somewhat like a real-time living donor registry.
KPD is a vital service because it helps broaden a patient’s circle of potential living donors. KPD actively works to match patients and donors with a secure computer database using advanced algorithms to facilitate matching and dramatically increase rates of success. Overseen by a medical advisory board, KPD has three matching cycles each year where the donor and patient blood is digitally tested to find an ideal pair. These matching periods not only make it possible to complete donor/patient chains but also allow all involved to have better planning options than compared to the traditional system with a deceased donor.
When speaking of the choice, Brendan put it in easy terms saying “… if you had the opportunity to save a life, wouldn’t you take it? Love makes sacrifice simple. When you think about who you would donate to – your friends, your family, siblings, coworkers – the circle keeps getting bigger and bigger. And after you donate, you realize that willingness is boundless, there is no circle because you really are giving the gift of life.”

HOW KPD DISRUPTS THE TRANSPLANT PROCESS
There are two very important things that make the life-saving changes of KPD possible: 1) Informed and courageous donors and patients like Joanne and Brendan and 2) Incredible technology advancements made possible by Canada’s thriving research and development in applying innovation in medicine.
Joanne and Brendan were blessed to find themselves on this journey in Toronto. The transplant program at UHN’s Toronto General Hospital is a world leader in H “…IF YOU HAD THE OPPORTUNITY TO SAVE A LIFE, WOULDN’T YOU TAKE IT? LOVE MAKES SACRIFICE SIMPLE.”DISRUPTION MAGAZINE | SEPTEMBER 2018 | 15 transplant research, the largest transplant centre in North America, and home to the smartest minds in transplant procedures. Under leadership from this hospital, the country’s medical professionals have access to the best technology available to create an advanced matching system that makes finding ideal donors and patients possible.

BY MATCHING DONORS MORE CLOSELY, THE KPD SYSTEM DRAMATICALLY REDUCES THE CHANCE OF A KIDNEY BEING REJECTED.
As Joanne explains “…a transplant isn’t a cure, it’s a treatment and eventually your body will figure out that you’re tricking it into accepting a new kidney. But, the closer the match, the longer it will take before the body rejects it.” A close match could mean upwards of 30 years of additional life versus perhaps only10 with a less closely paired kidney.
Moreover, Canadian healthcare research has further disrupted the traditional transplant process with advanced methods of determining if a transplant will work before either the donor or patient go under the knife. With this new process, blood, proteins, and antibodies from donors and patients are first matched digitally, then mixed in a lab, simulating how an actual transplant would likely react before surgery or any risk takes place.

Also, because of Canada’s innovative, patient-focused healthcare system, great precautions are taken when accepting donors into the program. Both physical and psychological tests are given to ensure the safety and best outcomes for all participants – all without concern for profit as is the case with other healthcare systems. Instead, energy is put into patient well-being and creating technology that can transform and save lives across the country and throughout the world.

GIVING THE GIFT OF LIFE

In January of 2017, after Brendan met the strict donor requirements, a year working with KPD, and Joanne’s kidney function falling to just 8%, there was finally an opportunity for both Brendan to donate and for Joanne to receive a kidney from another anonymous donor. Their involvement would end up completing a chain of surgeries across Canada, with multiple patients receiving nearly ideal matches.

Fittingly, Joanne was admitted to the hospital on Valentine’s Day for her transplant, and Brendan would donate just a few days later. Before the surgery, Joanne’s kidney function had slipped even further to 4%. But within minutes of the transplant, her new kidney began working, giving her over 60% function within hours and a renewed strength and energy.

AFTER THE SURGERY

“When Jo came down to visit me the first time after the surgeries, we were both a little battle-weary … it was like, yeah, we’re going to remember this one,”chuckles Brendan. “But, really, (recovery) was like a second honeymoon, but better, because you didn’t have to go see the Pyramids or whatever. It was a total break in life, a true sabbatical. It was like everything else fell away and we were just doing the most important thing we could be doing. And we were together doing it.” On his own recovery, which was more difficult than Joanne’s, Brendan says it was little more than “…two weeks off work and I was back to playing squash and swimming within 6 weeks.” While Joanne felt her husband downplayed the recovery a bit, the couple both agreed that the experience of directly helping others to live longer was a rare gift and opportunity.

WHAT THE FUTURE HOLDS
As part of their incredible journey, both Joanne and Brendan are working to raise awareness about living donation, kidney disease, and what better transplant matching can mean for patients and loved ones. They are working closely with University Health Network (UHN) to support the Transplant Program’s Live On fundraising campaign. The Transplant Program not only helped improve Joanne and Brendan’s lives, but it is also Canada’s largest transplant program, performing more than 600 transplants per year and providing follow-up care to more than 5,000 recipients.

Having seen what their Canadian healthcare system was capable of, the couple realized their country had a lot to offer in the way of innovation and patient care. This is why they chose to champion the world’s first comprehensive centre for living organ donation at Toronto General Hospital. The Centre, which will work with end-stage kidney patients (and liver patients in due course), will improve the donation and transplantation process by improving the database of potential and existing donors, funding research to improve donor and recipient outcomes and, ultimately, creating awareness amongst Canadians about the opportunities for living organ donation, including the world- class innovations being developed at UHN.

For Joanne and Brendan, the decision to pursue KPD was easy. In large part, it was simply about math: KPD offered a far larger pool of candidates, therefore Joanne would have a better chance of finding a match. The opportunity to give back to others was also something that the couple found extremely important. This is why they have dedicated so much of their second chance to helping others in similar situations.

When discussing all they’ve done, and what the future holds, Joanne epitomized the couple’s community- minded philosophy saying, “Brendan’s selfless gift of love and the gift of my anonymous kidney donor has been hugely transformational. It has given me so much hope and excitement for another 30 years. And Brendan’s amazing gift has shown me that you have to give more in life than you take. So, now it’s my turn and there is no better way to focus this energy than championing the life-changing transplant work happening at Toronto General Hospital.”

More than 18 months after their procedures, the pair continues to fundraise, to speak to groups and to gain further exposure for live donation. To learn more about the Centre for Living Organ Donation, visit: https://www.youtube.com/ watch?reload=9&v=xuOrYjPDgLY&feature=youtu.be&app=desktop To learn more about the Kidney Paired Donation, visit Canadian Blood Services: https://blood.ca/sites/default/fi les/kidney-paired-donation-kdpprogram- 1000106651.pdf

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