Just before the final year of her pharmacy degree, Kristen Walsh was diagnosed with polycystic kidney disease (PKD), a tough pill to swallow. She's watched her mother, Cindy live with PKD for years, but living it herself, is a completely different experience.
After graduating in 2020, Kristen wrote about her first year living with PKD coinciding with her final year and graduation from the School of Pharmacy at Memorial University in St. John's, Newfoundland. "Life has a funny way of teaching us lessons sometimes," she wrote. "At least, that's how I like to look at my situation. I hope to be able to take this experience in my own life and use it to care for my current and future patients."
Finding the silver lining in a chronic disease diagnosis isn't easy. As Kristen will tell you, it takes work.
"At the beginning, it was so overwhelming. I had issues with mental health – anxiety, depression – prior to my diagnosis, and after being diagnosed, I could feel it starting to creep up on me again. I went to see my therapist who I've seen for years. She told me I was grieving my healthy self and that this was just the beginning."
As far as Kristen and Cindy know, Cindy is the first diagnosed case of PKD in her family. Cindy was diagnosed at the age of 21 when she was pregnant with Kristen. While Cindy has her speculations who else in the family might have had the disease, there’s no way to know for sure.
"My mom and I have definitely become a lot closer since I was diagnosed, we were really close to begin with, but being the only two to have PKD in the family – it was very emotional at first, but we got through it. It's nice having someone who has the same dietary restrictions as you."
Food has played a huge part in Kristen's PKD journey. "At the beginning, there were so many restrictions and measurements – I didn't know what to eat or how much water to drink. It was so hard to find recipes and figure out the day-to-day routine."
Once Kristen found her footing with PKD-friendly cooking, she created an Instagram account to share her findings and experience with others. "I fine-tuned a lot of recipes and I wanted to share that. If just one person comes across a recipe they like, that's something good that comes out of me being diagnosed."
"I was a little nervous when I first made the account because I didn't know if people were going to criticize me for constantly talking about my disease because it is something I talk about all the time. I know kidney disease is just a fraction of who I am – I don't want people to only see that part of me and pity me for it – but I don't want people to feel like they can't talk about their disease. If someone has diabetes, tell me about your diabetes, talk to me about your depression or whatever. Instagram has been great like that. I get a lot of good feedback. People message me to ask questions about ingredient substitutes and little things like that. That doesn't seem like a big deal but it makes a difference in my day."
The prospect of kidney failure has become a reality for Cindy. At 20 per cent kidney function, discussions about live donor kidney transplant and dialysis are becoming more frequent.
"They're hoping to get her a preemptive transplant so she can avoid dialysis. We're thinking about looking for a match now so when the time comes, we'll have a plan in place. They also told us about the paired donation program, so that’s an option too."
Even though she started managing her PKD early, kidney failure is a possibility for Kristen as well.
"I was talking to one of the coordinators for living donor transplants. I wanted more information for my mom and I was explaining that I have PKD too. The coordinator asked if I knew my blood type. I told her I was O positive and she said, 'you need to break up with your boyfriend and find an O,' it was pretty funny."
Only time will tell if Kristen will need a transplant. "It depends if my PKD progresses in the same way that my mom has. And if I end up needing a transplant, who knows what will exist by then – there could be bionic kidneys at that point."
Having come to terms with her diagnosis, Kristen wants to help others do the same. "It sounds so simple, but it's complicated; PKD isn't a death sentence by any means, but it is life-altering."
"It's not always easy to accept the cards you've been dealt, and then you have to figure out 'where do I go from here?' I want to help people figure it out – that's my goal: showing people you don't have to feel guilty about having a disease and being upset. Being upset is part of the process. I want to show people that it's okay to grieve, and we can figure out where to go from there together."
Living organ donation has always been on Megan Thomas's radar. For most people, it is something they will likely never think about. For Meg and her family, organ donation and transplant have been a fact of life.
On September 16, 2019, Meg shared her remarkable story with hundreds of living donors, transplant recipients, their family and friends at the Living Organ Donor Recognition Event hosted by the Centre for Living Organ Donation at Toronto General Hospital.
"Most people would probably think I'm absolutely crazy to call Toronto General Hospital 'my home away from home,'" she joked in September. "But I grew up here – it's where my Mom had two liver transplants."
Meg's mother, Jan, has Polycystic Liver and Kidney Disease, a hereditary disease that kept her in Toronto General for large stretches of Meg's childhood and adolescence. Meg estimates she has met 100 doctors in her lifetime. "It comes with the territory when you have an extremely ill mother. But I can say without a doubt that I have never encountered staff like the transplant staff at Toronto General." After listening to a few of her stories, you can understand why.
When she was 17, her mother's hepatologist, Dr. Les Lilly, helped her with an OAC Science and Society project on Organ Transplants, braving early morning traffic to Newmarket to help her present (she received an A+). When Jan received news that they had found a liver for her second transplant, the staff cried with relief alongside her family and accompanied them down to the operating room at 6 am. "I know a lot of people don't have stories like ours about their doctors and nurses. They became our extended family."
In 2014, Megan got serious about becoming a living donor. She lost 40 pounds, and made exercise and healthy eating part of her daily life. It had always been her intention to donate a kidney to her mother, who after two liver transplants was in need of a kidney. But things don't always go according to plan.
In late 2016, the health of a close friend was failing. Her second living kidney transplant had been cancelled and things looked desperate. With Jan's encouragement, Meg got tested for their friend.
She was a match, and the transplant was a success. Filled with the deep satisfaction of having saved a friend's life, Meg began to write about her experience. "Through writing I started to feel as though my living donation journey wasn't complete yet. I couldn't find the perfect ending, and then I realized it was because my journey wasn't over."
On May 23, 2019, Megan donated a portion of her liver to one-year-old baby Nyla. Nyla was born with biliary atresia and had lived her entire life in Sick Kids Hospital before Meg's donation. Aniyah, Nyla’s mother, named Meg godmother to Nyla, and the three of them celebrated their six-month "liver-versary" on November 23, 2019.
"It's been a really eventful six months – there's so much to celebrate. Nyla is eating solid foods, crawling, walking and talking, it's just incredible. And I've healed beautifully. My liver has fully regenerated and I have a foot-long scar fit for a warrior. I went back to work, I turned 40, bought a new car, and became Chair of the Board for Character Community of York Region, one of my favourite charities."
Meg is currently the Executive Director of Clarico Place York Region, a non-profit that assists individuals with identified disabilities, and was the winner of the Award of Merit from the Ontario Association of Youth Employment Centres, as well as the Outstanding Volunteer Award from Character Community. She is currently writing a book about her experience with living organ donation. Even with all that she has achieved, she does not intend to stop anytime soon.
"I know there's more to come, that there are going to be more ups and downs. Beginnings are scary and endings are often sad, but it's the middle that matters the most. I choose to search for the small things in every day life that put a smile on my face. I choose to be grateful. I choose to be brave, and to never wait for permission to start changing the world."
On Valentine's Day 2017, Joanne Kearney was admitted to Toronto General Hospital with four per cent kidney function. She would soon receive the life-saving transplant she had been waiting for, thanks to her husband's decision to donate his kidney to a complete stranger.
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!"
Some details have been changed to preserve the anonymity of those involved.
The Centre for Living Organ Donation at UHN was created to improve access to living organ donation for people who need a life-saving kidney or liver transplant and those who want to give a transformative gift of life. If you have a story to share or would like more information about living organ donation email us at
livingorgandonation@uhn.ca.
As Canada watched COVID-19 overwhelm Italy's health care system, Bojan Stoiljkovic's only thought was how to help. Travel restrictions ruled out volunteering in Italy, and as the pandemic continued to spread, Bojan would soon be needed in Canada.
In response to the growing number of COVID-19 cases in Long Term Care (LTC) facilities, UHN has offered support to the Rekai Centres, LTC facilities in downtown Toronto. In April, UHN put out a call for clinical staff volunteers to assist LTC workers in their efforts to care for their patients during the outbreak. For Bojan, the opportunity to volunteer touched him on a personal level.
"My grandmother was in a LTC facility," he explained. "Not here in Canada, but it was very similar conditions. She passed away during a flu epidemic when visitors were not allowed and I wasn't able to see her when she died. When I saw the call for volunteers, I thought about her and how I would feel knowing that she needed to be cared for and that there weren't enough resources available for her. When I thought about that, I was very glad to go."
Bojan joined fellow nurses, physicians, support staff and members of the UHN leadership team to provide care to LTC residents, despite the fact that these facilities had become high-risk environments. With a pre-existing lung condition, Bojan is slightly more vulnerable than most, a fact that gave him pause.
"Being unsure whether or not my lungs would survive the infection definitely passed through my mind but then I saw the call for volunteers. They really need people to go there and help. I just thought, 'something has to be done and I can do something.' It’s not all about me – it's also about these people who are really vulnerable."
With proper personal protective equipment (PPE), health care workers can care for patients during COVID-19, even where the rate of infection is high. While PPE does not eliminate the risk of infection for health care workers, the risk is significantly lower. Typically, LTC facilities have one registered practical nurse and a staff of personal support workers (PSW) who care for residents and assist them with daily tasks.
"I was amazed to see doctors, surgeons and program directors working as PSWs and taking every opportunity to help. They weren't sitting in a corner, waiting for the shift to end, they were like 'who else is there? What can I do?' There was one surgeon going from patient to patient to cut their nails. It was so impressive to watch her."
At the end of his 12-hour shift, Bojan felt emotional, especially when thinking of his grandmother and other elders. "People in these facilities are the people who built this country – they're our mothers and fathers and they need to be well taken care of with dignity. Considering both nursing and medicine are based on holistic approach to health and patient-centred care, it was nice to see that being put into practice."
"I think it's really impressive that some people choose to spend their careers helping this population. And you can learn a lot in LTC homes. Most of the technical advances in nursing are happening in LTC and nursing homes actually. There are robotics that are used for social assistance in eldercare, and when you’re working in LTC you can learn so much more because you work with people who have very complex health issues. LTC is an amazing opportunity for a health care worker, and I really admire people who choose it as a career."
Bojan intends to volunteer at the Rekai Centres again, once he has completed a final assignment for his master's in nursing course. In the middle of a pandemic, something as normal as doing a final assignment seems strange, but for health care workers, there’s no slowing down. "We can't just think of ourselves. We are here to help others and we are in all this together."
