"Knowledge is the strongest tool you could ever have," says former Toronto Police Chief Mark Saunders, kidney transplant recipient at the Ajmera Transplant Centre.
Mark retired in 2020 after 37 years with the Toronto Police Service, the final five years as the first Black Canadian to lead the force. But he continues to be active and share his story – most recently on the ACB Organ Health YouTube Channel launched by a group of African, Caribbean and Black (ACB) patients, health professionals and creatives to raise awareness, improve access to transplant and reduce barriers to health care.
As a Constable for the Toronto Police Service Emergency Task Force in the mid-to-late 90s, Mark suffered severe abdominal cramps. He was unsure of the cause. His superiors told him to go home and look after it. Mark attended a walk-in clinic where he was given medication that did not improve his condition. As a result, he wound up in the hospital in ICU for several days.
It was there that he found out that he had only one functioning kidney.
"At birth, one kidney did not grow. It was very close to the spine and tiny," he explained during the interview.
Mark was in his 30s. He had no idea he had been functioning with one kidney his whole life.
"You can live a healthy life with only one kidney, but I also had renal disease," Mark added.
As his kidney disease progressed, Mark started needing peritoneal dialysis.
"At the time, I was Chief [of the Toronto Police Service], and I was healthy enough to do that. It was a matter of being hooked up to the machine for eight hours a day every single day.
"That was the one that fit my lifestyle the best. Nobody knew I was going through renal disease for quite some time. I was still running the organization. I planned my schedule around ensuring I had that eight-hour window at all times. I could still function on my day-to-day, not have people know what was going on and still be relatively healthy, or as healthy as you can be with the dialysis machine."
Mark and his wife trained to use the machine. The two had a system. If Mark came home late, Stacey would have it set up, and Mark would plug into the dialysis machine. He also had to take the dialysis machine with him on trips and ensure the hotel had room. It was a complex process for nearly two years.
"When you're the leader and you're dealing with law enforcement, if the wrong information gets out there, that becomes the story – not about skills and ability but this is a dire straits moment for this individual," he said.
When Mark's kidney function dropped to 11 per cent, he was put on the kidney transplant list. He learned about the living transplant process. When he told his wife, she replied, "That's great. You'll have to go through me first."
Stacey got tested and was a perfect match.
The surgeries took place at Toronto General on October 2, 2017. Three months later Stacey had fully recovered and Mark was back at work.
"Knowledge is the strongest tool that you could ever have.
"What's great about Ontario is that you can go on that live [donor] list and help loved ones.
"The more knowledge we can give people the better chances for people to make a good and solid informed decision."
Watch the full interview with Mark Saunders:
In her early twenties, Jennen Johnson was diagnosed with Lupus, a rare autoimmune disease. She was told that one day, she would need a kidney transplant.
"Honestly, I didn't believe the doctor," remembers Jennen. "I felt healthy, I was fine. I didn't have to worry about kidney failure because that wasn't going to happen to me."
Kidney failure is a difficult fate to accept, especially in your early twenties, and for Jennen, learning to live with her disease pushed transplant to the back of her mind.
"To be frank with you, lupus is a pain in the butt," she laughs. "It's a lot of joint pain, in the beginning especially. I felt it in my fingers, my knees and joints. For me the only way to alleviate the pain was through movement. I'd be sitting in the living room or sleeping in my bed and I'd have to get up and get on the exercise bike and start moving. Every pedal, every push, was so painful – but it's the only thing you can do to alleviate the pain. Sometimes I'd have to trudge to the living room at 2 a.m. and just start peddling."
Now, in her mid-forties, Jennen's lupus is "sleeping." Like other autoimmune diseases, lupus has a cycle of flare-ups and remissions. Kidney problems are seen in approximately half of all lupus cases.
As Jennen's kidney function decreased and her daily life became increasingly disrupted, she struggled to accept the reality of her circumstance. "I was at the point where I was vomiting whenever I would eat but I was still thinking, 'nope, it's going to fix itself.' It was very hard to come to terms with it."
Jennen's doctors walked her through her options, explaining the different types of dialysis available. She opted for peritoneal dialysis, which would allow for home treatments. As a mother and wife working full-time, Jennen felt peritoneal dialysis would be the least disruptive.
"Dialysis was not a very smooth route for me. At one point, the catheter stopped working, so I had to have surgery to get it removed and another one put in. While I was waiting for a new line, I went ahead and started doing hemodialysis, which meant going to the hospital."
"I met a lot of great people while I was doing dialysis. You know, you're there for four hours and you can either watch TV or talk. We shared stories. I made friends. Even to this day – well, pre-coronavirus – I like to swing by and say 'hi' to the patients and staff. The people are the silver lining of dialysis."
While lifesaving, dialysis takes its toll – on patients and their families. Jennen's daughter Tatiana was 12 when Jennen started dialysis. "I was very open with her about my condition. She fully understood and was aware of what was going on. She took it hard."
"There were times when she was in school and she would just start crying. Sometimes she wouldn't even go to school because she knew that I had dialysis and she wanted to be with me. She wanted to protect me. It was hard for her, but I explained that we could be strong for each other. Her dad and her nana and I just kept reinforcing that 'this too shall pass. We're going to be okay.' That became our motto through all of this."
Despite the family mantra, Jennen was struggling to come to terms with her condition. "Finally, my mom just said 'listen – cry, scream, do whatever you need to do but you need to cut this denial now. You have a daughter to lookout for – we need to get the ball rolling. Let's shake this off, and let's go through the motions of finding you a kidney donor.'"
It was Jennen's mom who suggested putting an ad in the paper. "It was something I never would have considered but I thought, 'this woman has never steered me wrong for over 40 years, why not?'"
A personal ad in search of a living kidney donor was unheard of at the time, and Jennen was rejected from all the major newspapers in Toronto. Finally, NOW Magazine offered to share her ad. Jennen opted to share her story on Facebook as well, which is how she met Christi.
"Christi used to go to the same church as my cousin, Maggie. Christi saw the post and contacted my cousin saying she was blood type O and the rest is history. When Christi reached out to me, she was so nonchalant about it. She told me she saw my post and she wanted to know what forms she needed to fill out so she could be tested. She filled them out right away and didn't even think twice."
"I was so impressed, I said to her 'you know, if this does not work out, you are a friend for life because of the fact that you were just so eager and willing to give up part of yourself for a complete stranger.' She never met me. She just saw my post and that's it. That's all she saw. She didn't even see my face!"
Christi was confirmed as a 92 per cent match, and the two decided to meet before the surgery.
"We met at the hospital, and I immediately started to ugly cry and then she started crying as well. Eventually, we got ourselves together and got something to eat at the hospital. We just talked and got to know each other."
The surgery went smoothly for both Jennen and Christi. When she woke up, the first person Jennen asked for was her daughter. "She came up to me and said, 'I'm here.' I asked her to give me a hug and then I fell right back to sleep."
When she woke up next, Jennen had the best kidney function she had had in years. "I felt like a new woman. I had energy, my face had colour, my hair was looking healthier, I was peeing normally, and I just felt different."
Jennen returned home to begin her recovery, which was not without its challenges. In their first year post-surgery, transplant recipients are given a strong dose of immunosuppressants to prevent organ rejection. Though they remain on immunosuppressants for life, the dosage is lowered after the one-year mark.
"Recovering from the surgery was painful, but it wasn't anything I couldn't handle. Getting used to some of the medications was challenging. I just couldn't sleep and I was just lying in bed, tossing and turning, and my husband would lay beside me and rub my back until I fell asleep."
In addition to her immunosuppressants, Jennen also takes medication to protect her healthy kidney from lupus, should it flare up again in the future. While it is possible that Jennen may need another kidney transplant in the future, it's unlikely.
"I'm just focusing on the precious moments right now, running around with my daughter, getting ice cream with her, going to different amusement parks and doing things we stopped doing because of the kidney disease – it all adds up. Those moments are precious to me."
Christi recovered quickly and returned to her work teaching yoga. "Christi always says she wears her scars from surgery proudly. She doesn't hide them – she puts them out there and she's not embarrassed. She saved a life, and she says her scars are a badge of honour."
With kidney failure in her rearview mirror, Jennen is able to reflect on her experience and offer advice to those who have a kidney transplant in their future.
"First, even though it's hard, you need to ask your friends and family for help. For the longest time I didn't know how to ask and I didn't know what to say but you have to put it out there, you have to tell people what you're going through and you can't let pride hold you back. Secondly, you need to keep the faith. Things will be difficult but please realize that this too shall pass!"
"I couldn't have asked for better results. I was blessed to have Christi as my kidney donor. Everything turned out amazing. I can keep up with my daughter and I couldn't before – that's a gift. Now I just have to keep giving back, I can't just take this amazing gift and walk away. You should always pay it forward!"
In early 2011, Jennifer Bieniek learned she was going to need a kidney transplant. Her doctors suggested that she consider a living donor; with a preemptive transplant, she could avoid dialysis completely. But, as Jennifer will tell you, things don't always work out as planned.
"When they started talking about transplant and living donors, it didn't really hit me at that point – that transplant was a reality that was going to happen in the next year and a half," she remembers. "You go from 'your kidney function is going down' to 'you're going to need a transplant'. My health went downhill pretty quickly after that conversation."
With her kidney function in rapid decline, the original plan to avoid dialysis was scrapped. "At my first assessment they said my creatine was so high they didn't know how I was standing there talking to them. I started hemodialysis that day."
Even as a plan B, dialysis was a bumpy road for Jennifer. She was switched from hemodialysis to peritoneal dialysis to allow her more control over her daily schedule. But the peritoneal dialysis wasn't working well for Jennifer. It was removing too much fluid and not enough toxins, causing frequent dizziness. She was switched back to hemodialysis.
"I always knew dialysis might be something I would have to do, and I was never really opposed to it. But as soon as you experience dialysis, you're like, 'no way.' You can't live your life like that. It would drop my blood pressure so quickly, it knocked me right out. It made me feel horrible."
To many, the idea of finding a living donor is daunting. "It's a big ask, and I didn't want to ask anybody," Jennifer explains. "that was something I didn't want to do. I thought if someone offered, we'd go from there. I just told a few people that my kidneys were failing and that living donation was an option for me."
Gradually, Jennifer's story made its way through the grapevine. The number of people who came forward – from her family, her work and her community – astounded her.
"It was really amazing and humbling at the same time. You don't realize how many people care about you in your regular day. You have a few laughs with people at work but you have no idea that they would step up and do that for you. I know not everybody has that. I'm very lucky."
Among those who came forward was Jennifer's younger sister, who was identified as the best match. As the surgery date approached, Jennifer began to feel anxious. "I was so worried for her. Logically, I knew the surgery was safe, that they wouldn't do it if it wasn't. But I couldn't stop thinking about the future; if anything happened to that one kidney she had left, that would weigh really heavy on me."
When Jennifer woke up from surgery, she could feel her sister's healthy kidney working. "It started to work immediately. I felt better right away. All the toxins were clearing out of me." While Jennifer's recovery went smoothly, her sister felt nauseous as her body adjusted. She returned home after three days in hospital; Jennifer followed two days later.
Years later, Jennifer's sister continues to exercise regularly. The tiny scars from her laparoscopic surgery are barely visible.
"It's amazing. Her life is no different, and I'm way better than I was before. I was able to get a permanent job – I'm a full-time teacher now – and I was able to have my daughter. That would never have happened on dialysis. I know it's possible, but I wouldn't have wanted to put pregnancy on top of how I felt."
Although she shares her story openly now, Jennifer wasn't always so comfortable sharing. "I talk about it all the time now. I think it's important. Every time I tell people, they're shocked. They don't realize that it's not just older people getting transplants, it's young people, it's kids too. They don't know that so many people live so well after living organ transplants. It's true. There's nothing I can't do anymore."
Fate has a funny way of helping us find each other. In 1988, Jane and Phil bought a house from Janet and John, who were moving just a few blocks away.
"On our second day in the house, I decided to make roast beef and the oven died. That could have been the end of our friendship," laughs Jane. "I'll never let them forget it."
The couples saw each around the neighbourhood. They would stop to chat at the schoolyard and invite each other over for a visit every so often. When Jane and Phil invited Janet and John to their cottage, Janet disclosed that she had polycystic kidney disease (PKD).
Of four children, Janet was the only one to inherit PKD from her father's side. Her father and three of his siblings had PKD. He was 57 when he passed away due to kidney failure.
"I had always anticipated that after I turned 60, I would need either dialysis or a kidney transplant. After seeing what my uncle went through with his PKD, I did not want to go on dialysis. That was one of my goals," says Janet.
"We knew at some point, based on family history, that my kidney function would start going down. A nephrologist at Toronto General monitored me very closely from my mid-30s to my mid-50s. During that time, I felt good so I lived my life. I skied, I golfed, I ate, I drank, I swam – I did everything because it's a genetic condition and I knew that I had no control over it."
In her mid-50s, Janet's PKD started to take a physical toll. "When I was first diagnosed with polycystic kidney disease and polycystic liver disease the hardest part was the physical change. I went from a 24-inch waist to 35-inch waist. That change came with a lot of self-esteem issues, some depression, anxiety – I held back from going out. After a while, I just said to myself – as Jane would say – 'suck it up buttercup!'"
"The physical change was my first 'new normal,' and then my other 'new normals' came when my kidney function really started to decline. I felt the fatigue – I couldn't do the things I used to be able to do. Between the ages of 55 and 60, I would say to myself, 'okay, I can do three things today.' So grocery shopping, cooking dinner and talking on the phone – that was a full day. Setting little goals each day helped me keep going."
Janet was sleeping 12 to 14 hours a day. As her exhaustion took over, she would set two goals per day, then one. "It was hard for John. It was like he was watching a bad movie he couldn't turn off."
"Janet put on a very good front," remembers Jane. "She would push herself, but I think that's such a slippery slope. I don't think that John and Janet really knew how bad it was watching from the outside. Janet didn't want to miss out on life but you could just see the colour drain from her face. You could see the light being drained out of her, out of John too."
In September of 2018, Janet's kidney function declined rapidly. Having already made up her mind to avoid dialysis it was time for Janet to start looking for a living donor.
Her brother, among others, came forward but was ruled out. Another candidate was deemed healthy enough to donate but was not a match for Janet. After talking it over with their loved ones, the friend decided that the Paired Kidney Donation Program – a national program that matches incompatible pairs with one another to create suitable matches – was not something they wanted to pursue.
"I completely and totally respect that decision," says Janet. "It didn't affect our friendship at all. But it did mean more waiting, and the waiting was so hard."
Since first hearing the words "kidney transplant," Jane had made the decision that she would apply. "Phil said to me, 'are you sure? Because once you start this process you have to finish it.' I was sure. I filled out the paperwork. I was ready and my family was 100 percent behind me."
"We talked about it and decided that even if I wasn't a match, I would do the paired exchange. What's the difference between giving a kidney to Janet and making sure she gets a kidney? Getting her a kidney was the priority and if I could help – in whatever way – I would. I can see how it's uncomfortable for some people but for me it made sense."
With two potential donors ruled out, Jane was next in line for testing. She started the testing process, doing her best to put her emotions aside.
"I'm a very black and white type of person. I wanted to keep the emotion out of it. I feel bad now, because I did push Janet back a bit at the testing stage. I didn't want to disappoint or be influenced. At the end of the day, the decision had to be mine."
Jane and Janet were a match. When Jane called to share the good news, Janet cried with gratitude. Their surgeries took place in late August. The transplant was a success with no complications.
"When I woke up, I was pretty out of it," remembers Janet. "And I'm not sure exactly what day after surgery it was but I remember seeing Jane there and me saying, 'what the heck are you doing out of bed?' She was holding her side, but she was being all stoic about it and she said, 'I just needed to see you.' She'd just had a kidney removed and here she is sitting and smiling and yakking away."
Janet's new kidney began working instantly. She was released from hospital two days after Jane. "It was like somebody turned on a light for Janet. It was spectacular to watch and so exciting and so rewarding seeing the result. It was a gift, watching her come back to life."
Several days after returning home, Janet woke up at 6:20 am. "I remember looking at the clock and being stunned. I turned on the news and I could focus, I could concentrate on what I was watching and hearing. Before, I couldn't retain anything. My brain was foggy all the time. But here I was at 6:20 in the morning actually absorbing the words on the news. I couldn't believe it. I was up until 9 p.m. that night! I was awake for a full day. There was no looking back after that."
After being discharged, Jane and Phil spent two days at a relative's home in Toronto before making the journey back to Muskoka.
"Getting into my own bed was the best thing in the world," says Jane. "And from there, I just walked a little more and a little more each day. I have dogs and a fabulous place to walk so getting up and moving was no problem. My kids brought tons of food. I had an amazing support system."
"I must admit, for the first six months I was a little more tired than normal, but it's the process of having surgery, right? It takes time to heal. You just have to respect your body, listen to your body, push it a bit when you can. I did have one goal though: I wanted to be dancing at my son's wedding."
Three months after surgery, Janet and John joined Jane and Phil in celebrating their son's marriage.
"Thanks to Jane, we made it to the wedding, and I'm so glad we were there. How do you thank someone for such a gift? I went from sleeping half my life to walking up a flight of stairs and dancing at a wedding. I got my life back."
To show her gratitude, Janet threw Jane and her family a party. "It was over the top," laughs Jane. "But it was amazing and much appreciated."
Although kidney failure is behind her, Janet remains entwined with the transplant world. Since recovering, she has become a member of the Centre for Living Organ Donation's Volunteer Advisory Council and offers support to those with kidney disease through the Kidney Foundation of Canada.
"Being where I am now, I would encourage everyone with kidney disease, everyone who needs a transplant, to let people know you have a disease," says Janet. "Tell them you're going into kidney failure, liver failure, whatever it might be for whatever reason, because the more people who know what you're going through, the more people will step up to help. Don't be afraid to ask for help."
"People still ask me, 'why would you do this?'" muses Jane. "And I say 'because if I was in her shoes, I'd hope somebody would step up for me.' That's all it is, putting yourself in someone else's shoes. I think that's a big part of being human and it's something we've lost. The choice to do something that isn't for you is such a joyful feeling. It's what we're here for, to help other people."
In 2016, Fadia, at the age of 32, received her new kidney. Five days later, healing and already enjoying a healthy kidney, she was discharged. "This is life changing. It's another chance at life."
Learn more about Fadia's journey »
