For Linda and Mike Willis, organ and tissue donation has always made sense. In 1983, the married couple signed up for the bone marrow registry. The pair were already regular blood donors, and would eventually become deeply connected to the world of transplant.
"I got a call in 2002," remembers Linda. "I was a match for someone. They told me to go talk to my family and then call them back tomorrow. And I said, 'no, what's the next step? I've already had that conversation.'"
As eager as Linda was to get started, the process for donating stem cells via bone marrow typically takes 3 to 6 months. But her intended recipient couldn't wait. In one month, Linda was sitting in Princess Margaret Hospital preparing to donate.
"They take anywhere between 500 and 1500 mils, depending on the size of the recipient. They wanted 600 mils from me. Mike and I just looked at each other and said, 'little person.' The doctor said 'no comment, but you've done your homework.'"
In 2004, Linda would donate leukocytes to the same child. Later that same year, she was contacted again to be one of the first to donate stem cells at McMaster. While bone marrow and stem cell donations have become synonymous, the true distinction between them is where the cells come from, which determines the method of collection. For certain cancers, chemotherapy can weaken or kill stem cells (in addition to cancer cells). Stem cell transplant replaces the lost cells, which in turn, will make new healthy cells.
For those in need of a stem cell transplant, the chances of finding a match are low. Unlike organ donation, there are a significant amount of biological factors that need to align. Mike never received a phone call like Linda's, though he still managed to do his part. A universal donor (blood type O negative), Mike has donated blood over 160 times.
Six years after her first donation, Linda found out that her recipient had passed away. "I had done three donations, all to the same child, and then they told me they were taking me off the list and they'd contact me if my little recipient needed me. I asked for an update every year. They don't tell you much, they can't, but I did find out that he – I have a feeling the child was a boy – passed away. I had really mixed emotions because it was part of me. I felt connected to him."
Though Linda was saddened by the loss, she was soothed knowing that she had given her recipient some extra time with their family. Mike and Linda's lives in Guelph continued. Both are long-time motorcycle racing enthusiasts and at the time, Mike was still racing occasionally. The couple became fast friends with one of the announcers, Lindsay.
Then, in 2014, two days after their 35th wedding anniversary, Mike and Linda were out for a walk when Mike couldn't catch his breath.
"He ended up in the hospital with congestive heart failure. That was the beginning of everything. We didn't have to relocate thank goodness but we were transferred to Guelph General a few times. Once, in the doctor's office in Guelph, she couldn't find a pulse to get a blood pressure reading. She told me to take him to emergency, she said she would call ahead to let them know we were coming."
"In the car I remember thinking, 'I should've just called an ambulance. If something happens, there's nothing I can do.' It was really scary. When I got him to the hospital, within minutes, they had the paddles on him in case they needed to shock him. That happened a few times."
Mike was listed for a heart transplant. Although O negative is the universal donor, those with type O blood can only receive from type O; the doctors warned that because of this, a new heart could be up to two years away.
"At that point he could only walk about 10 feet maximum using a walker. It had already been months, and when they said two years, he just looked at me. He didn't have three or four months left in him, let alone two years."
To maintain some sense of normalcy, they continued to frequent the motorcycle track. Linda officiated and volunteered, while Mike watched from the sidelines. "He wanted to be out there, and it was good for him. Keeping him in a bubble wasn't an option, that's just not him."
Despite the doctor's warning, Mike received a call after just a few months. The hospital had a heart for someone. They wanted Mike for backup.
"We were told you could be called in for backup five or six times, but this was our first call so we were excited. They called us just after noon and we were there by 2:30 p.m. They did the blood work and a few other things and we waited. At 6:30 p.m., a couple of nurses came out into the hall. They had sent the other guy home. We told ourselves it was too good to be true, we didn't want to get our hopes up. Five minutes later, they walked up to us and said, 'okay Mr. Willis, this heart's for you.'"
Mike was wheeled into surgery just before 11:00 p.m. At 4:30 a.m., the doctor met Linda in the waiting room. The surgery had been a success. She could see him in a few hours.
"That first day I was only allowed to go into the room for five minutes out of every hour. He didn't know I was there. Finally, at around 2 o'clock, I needed to get some sleep. One thing I often tell caregivers when you're packing for the hospital is to bring a blanket and a pillow."
Mike made a full recovery, and sent a letter of gratitude to his donor's family. They responded just before Christmas. "I always thought he had a female heart because he was so talkative right after the transplant," laughs Linda. "But it was a male heart. The family wrote and told us all sorts of things about the donor, and there were so many things that connected Mike and his donor, so many shared loves between them. He loved his nieces and nephews – loved teasing them! – he loved strong black coffee, spicy food, apple pie, fiddleheads fried in butter. The one thing that didn't match is that the family said he was always late. Mike is ex-military so if you're not five minutes early, you're late."
Back at the track, Lindsay's health was declining. "We didn't know what it was at first. I don't think he knew he had issues with his kidneys until they were failing."
Days before his and Sylvia's wedding, Lindsay started hemodialysis. Their honeymoon was reduced to a series of day trips. Eventually, peritoneal dialysis allowed him to return to the track and some regular activities. Having seen what a new heart had done for Mike, Linda knew that a kidney transplant would mean the world to Lindsay and Sylvia.
"We were walking around the motorcycle show in Toronto and I just said to Lindsay, 'what's your blood type?' All motorcycle racers know their blood type. So he told me and I thought to myself, 'okay, I'm going to see if I can donate to Lindsay.'"
At the time, Linda had six friends in need of kidney transplants. "The decision of who to donate to was a bit of a hard one, but I went with my gut. Lindsay and Mike are more like brothers than friends. It felt natural to donate to him."
Linda was the third person to apply as Lindsay's donor. Thankfully, she was a match. The surgery date was set. It would be Linda's first major surgery.
Nephrectomies typically remove the left kidney. Linda's left kidney had two arteries, a risk for blood clots. They removed her right kidney instead. During Lindsay's surgery, after making sure the kidney was working properly, they removed his dialysis port.
"The day after the surgery, Mike said, 'do you want to go see Lindsay?' When I saw him, it was incredible – there was colour in his cheeks, he wasn't gray anymore. And you know, that's the first thing that I remember from both him and Mike. It was so amazing to see. There's a picture of the first time Lindsay and I saw each other after surgery. We're just looking at each other. At the time that picture was taken Sylvia said, 'you can call him the other half.'"
Donating a kidney meant going from optimal health to recovering from major surgery, going from caregiver to patient – a strange role reversal for Linda and Mike.
"It was different. My mother came to stay with us as I recovered. Having laundry done and meals made for me was a big help with recovery."
Now fully recovered, Linda remains an active advocate for living and registered organ and tissue donation. While Mike will remain on immunosuppressants for the rest of his life, he doesn't intend to waste a minute of his donor's gift.
"We'll be at the grocery store* and the cashier will say, 'have a nice day,' and Mike will say, 'every day is a nice day.' When they ask him what he means he just says, 'in the summer of 2015 I had a heart transplant. Every day is a good day.' We meet people who have connections to transplant all the time because we're both very open about it."
"We say it all the time: transplant and donation saves lives, it gives people their lives back. You can lead a normal active life after being a living donor, and the feeling in your heart is incredible. There's no better feeling than to know that you've given somebody their life back, that they get a second chance to live because of you."
*This interview and its details predate the COVID-19 pandemic.
When the doctors told Shirley Overholt that her husband Scott needed a kidney transplant, she didn't hesitate. It was news she had been waiting to hear since she was 18, when she and Scott first met.
"We've known a long time that this was coming, thirty-plus years," said Shirley. "He has polycystic kidney disease, which is genetic. We knew one day something would come up – that he would need a transplant or dialysis – and we didn't want Scott to go on dialysis."
While life-saving, dialysis requires time, and takes a toll on the body. Most patients spend an average of 12 hours a week on dialysis and experience extreme fatigue after each 4-hour session.
For those who are eligible, a kidney transplant is the preferred option. Better still, a live donor kidney transplant offers superior long-term outcomes and significantly shorter wait times than deceased donor kidney transplant, as well as the benefits of a planned surgery.
"Scott was very lucky. Right away he had four people come forward to be his donor. His brother was the first to be tested."
"Both Scott and I work at a large financial institution, and we were pretty open at work about what was going on. Every couple days my manager asked me, 'how's Scott doing? How's the testing going?' It was a really supportive environment."
When Scott's brother was deemed unsuitable, it was Shirley's turn. From the very beginning, the process for potential living donors requires considerable flexibility to accommodate the multiple rounds of tests, most of which must be completed at Toronto General Hospital.
"I've got it down to 15 minutes from my desk to Toronto General, and because of that I didn't have to take much time off for testing. I probably drove my transplant coordinator crazy because we were getting more and more desperate as Scott's kidney function was dropping."
"I told them, 'whatever appointment you make, I will be there for it' – and my employer supported that. If I got a call at 10 am about an opening for a scan at 11:30, I went. No questions asked. I had fantastic support that way."
In December 2015, Shirley donated a kidney to Scott in a pre-emptive transplant that allowed him to avoid dialysis. Both are fully recovered and living healthy, active lives.
While Shirley and Scott's is a success story, paid leave remains a significant barrier to many potential living donors. On November 27, 2020, the Canadian Society of Transplantation launched the
Living Donor Circle of Excellence, a program that celebrates employers who implement internal policies that provide salary support to employees who choose to be living organ donors.
Although there are initiatives such as the
Program for the Reimbursement of Living Organ Donors (provided by the Trillium Gift of Life Network), there is nothing in place to cover lost wages; and depending on the donor's financial circumstances, waiting for reimbursement of out-of-pocket expenses may not be a viable option.
"You know, we were very fortunate," said Shirley. "We didn't know if transplant would be an option at the beginning, we didn't know what would happen. But we had a lot of time to prepare for whatever was coming. Our whole married life we managed our finances based off of one income, just in case."
"If my employer hadn't been supportive of me donating, going in for tests, taking time off to recover after surgery, all of that, I would have quit. No question."
Thankfully, quitting wasn't necessary. Just recently, Shirley celebrated 30 years at the bank. "I have the green ribbon (for transplant) in my email signature. People are always asking me what that's about, and I'm more than happy to tell them."
Some siblings share everything. Linda Rackham and her brother John are case in point.
In his mid-forties, John had some routine blood work done for his job. Further tests revealed that there was protein in his urine, evidence that his kidneys were deteriorating.
"He called me and said, 'the doctor said I might need a kidney transplant,'" remembers Linda. "And the first thing out of my mouth was, 'well I have two, you're welcome to one of mine!' We kind of laughed about it but when we hung up, I did some research. We talked about it over the next year. The doctor said it wasn't important right now but it would happen in the future."
To be prepared when the time came, Linda started the assessment process and learned she was a healthy candidate. Thrilled that she was a potential match for her brother, she moved on to the psychosocial assessment.
As children, Linda and John had been separated in foster care. Linda was 14. John was 4. They wouldn't meet again until John was 18.
"I went in by myself first. The psychiatric nurse asked me, 'why is this so important to you?' I ended up telling this story from when my brother was 5 and I was 15. I remember going to the park and watching him play and knowing that I wasn't supposed to talk to him. I watched him for so long and then he spotted me. And when he saw me, he just ran from me because he was scared we were going to get in trouble."
The memory moved Linda to tears. While she dried her eyes, John went in for his own evaluation.
"He went in for his appointment and he comes out crying and I said, 'John, whatever's wrong?' And we had both told the same story. We had never discussed it before. I didn't even know he remembered."
With the assessment process completed, it was time to wait. They waited a full year. In July of the following year, the surgery date was set for September. Although John's kidney function was declining, they had managed to catch it early, and by having Linda lined up as his living donor, John was able to avoid dialysis completely.
Both Linda and John were amazed with the transplant results.
"The doctor said we couldn't have been a better match if we were twins. The kidney started working immediately. John hadn't been able to drink tea or coffee, eat salad – his diet was so restricted. The day after surgery, he had a cup of coffee, and he said it was the best tasting coffee he'd ever had in his life."
Linda's surgery and recovery were without complications, and her life continues on just the same. In her 60s, she continues to foster parent, and has become an advocate for living donation.
"Maybe I'm just lucky, but I can't tell you any way my life changed. The only thing I have is a scar to remind me that I have one kidney, and I wear that scar with pride. It's my badge of honour."
"There needs to be more out there on living kidney donation. I didn't realize that there's no age cut-off for kidney donation. It's done on a case-by-case basis. You could donate a kidney when you're 80 years old as long as you're in good health. I don't think a lot of people realize that."
John has taken good care of Linda's kidney. Linda visits him in England every couple years.
"I'm grateful that I got to do it. I had a chance to give John something no one else could, and make up for the time lost between us. I can't wait to see him this summer. He's picking me up at the airport. Last time he came to greet me, he bumped me – so we were hip to hip – and I said, 'What are you doing?' And he said, 'We're just saying hi.'"
There are more ways than one to find your living donor. You can start with your inner circle, the family and friends who are closest to you, and then perhaps you widen your circle to your coworkers, sports team, book club. The wider the circle gets, the more people have the opportunity to come forward and act on their instinct to save a life.
When Amanda Collins saw the social media plea for Teagan, an acquaintance's daughter, her instincts kicked in. "It was total mom instinct. We had six kids at home at the time and this was someone's little kid. She was four. I couldn't imagine my own kid being that sick."
Amanda met Teagan's mother at a conference for children with special needs. Months later, she saw a public plea for a kidney donor for Teagan on Facebook.
"Neither of her parents were a match, and they don't have a lot of extended family so she just said 'my daughter needs a donor with blood type O' and I said, 'I'm O, I'll get tested.' That's how it started."
At the time of her living donor assessment, Amanda's six children ranged from ages eight to sixteen, all with busy schedules. Throughout her assessment, Amanda and her husband balanced play rehearsals and sports practices with elementary, middle and high school homework.
Yet the Harington resident remembers the most daunting challenge being her commute to Toronto.
"I live in the country and I don't get how people drive in Toronto," she smiles. "But it honestly wasn't that bad. I made three trips before the surgery, maybe four. The subway goes right to the hospital. As for the testing itself, I was pleasantly surprised that it wasn't more. I thought it would be every week."
Crucial throughout the process was Amanda's own inner circle. "I got a lot of support. My dad was still alive then and he was great coming to watch the kids so I could go to appointments. My husband was all for it."
In the months leading up to the transplant, Amanda and her family socialized with Teagan and her parents. At age four, the concept of living kidney donation was out of Teagan's grasp. "She was more excited about playing with my daughters than anything that was going on between her and I," Amanda jokes.
When Teagan and Amanda were confirmed as a match, the surgery date was set. Amanda and her husband booked a hotel near Toronto General. For the first time, she experienced nervousness at the prospect of donation.
"It took me until the night before to realize I was going to be in pain, not enough to back out of course, but I ran through every possible scenario of what could happen with my husband. He reassured me that it would be fine."
It was. Amanda's surgery was without complications. Recovery, she admits, was painful. "It was the movement. We had everything planned out so I wouldn't have to do anything strenuous. But I didn't know how much effort it was going to be to get up and down from a chair."
In seven weeks she was back to most of her regular activities, just in time for summer vacation, a busy time of year for a household with six kids. By nine weeks, she was back at the gym.
"Donating a kidney is really not that hard," she laughs. "Okay, that's maybe too simplistic, but it's worth seeing if you can make it work."
"The most common question I get is 'how did you take time off from your life?' I tell them, we had six kids at home at the time, two are special needs, and we made it work. My dad, who had very little experience with choosing clothing for little girls, got stacks of Ziploc freezer bags with the kids outfits, labelled by name and date. You just find those ways to make it work."
Amanda donated her kidney to Teagan in 2016. She continues to stay in touch with Teagan and her mother. They have an annual lunch on the transplant anniversary, and make a point of seeing each other during the holidays.
Since 2016, Amanda has made sure to have the conversation about organ donation with her inner circle. "My kids get it. They don't understand why everyone wouldn't just register to be a deceased organ donor; that's definitely a byproduct of this. For my extended family, organ donation is a very open discussion. I know who in my family is comfortable with it, and I can be that voice if the question arises. There's definitely been a ripple effect."
To Amanda, the most significant, lasting effect of her donation is seeing Teagan.
"I didn't realize how sick she looked before, because I met her sick; that was just how she looked. Now she's a different kid. That gets me more emotional than anything that happened around the surgery. It's seeing the long-term with her."
Early in his teaching career, Michel Pleau taught a little girl in need of a double lung transplant who lived at Sick Kids. It was a sombre introduction to organ donation, a topic that would become the focus of Michel's life in the coming years.
We wanted to start a family, and we started a little later in life," explains Michel. "Never in a million years did I think I'd be where I am today."
When Michel's daughter, Sophie was in utero something wasn't right. The amniotic fluid was dangerously low. Doctors were unsure if she would be born alive.
Thankfully she was, but the low levels of amniotic fluid during gestation had prevented her lungs from developing. She was intubated and put on oxygen. After surgery, they monitored her blood work, which revealed that the low levels of amniotic fluid were due to poor kidney development. Three days after Sophie was born, she was put on dialysis.
"I carry BOR (Branchiootorenal) syndrome," Michel explains. "We found out through genetic testing. It's really rare in Canada. 1 in 60,000 people have it. It can have a variety of different anomalies with it: hearing issues, kidney issues, or both, or none. I'm hard of hearing. Sophie's deaf and her kidneys were affected. It's nothing we did wrong, it's just what happened."
Dialysis is risky for babies, but there were no other options for Sophie. "Peritoneal dialysis is easier on babies. Six weeks after she started that, they put a G-Tube in her so we could take her home. But she kept pulling the tube out of her nose. She was stubborn even then. She has the will to live, she has fight."
For eight months, Sophie lived dialysis free, only to start home dialysis later, a frustrating regression. "Life was really hard," Michel remembers. "Seeing her sick was hard."
Sophie needed a kidney transplant, but first she would have to meet the requirements. To be eligible, children must be at least 10 kg and 85 cm tall to ensure there is enough room for the kidney. They must also be walking, which indicates that their arteries are big enough for the surgery.
Sophie met the requirements early. She was two years old when she was approved and Michel began his assessment.
"I was so anxious to get going. And I'm not going to lie, I was afraid. What if they took one kidney and the other kidney failed? But I knew I had to do it to give her a chance at a dialysis-free life."
With Michel approved as a match and Sophie ready for transplant, the surgery date was set for May, only to be rescheduled because Sophie had a runny nose. "That really broke us," remembers Michel. Their new date was set for June. There were no setbacks and no complications.
"When I got discharged I walked over to Sick Kids. It took me about half an hour even though it was right next door. I walked in and Sophie was sleeping. When I saw her, I started crying like crazy, just like how I cried when she was born. I was just so relieved. The kidney was doing well – her creatinine levels went from 900 to 25 in 10 hours. Both surgeons commented on how good a fit the kidney was her."
Sophie returned home from Sick Kids and McMaster Children's Hospital three weeks after her surgery. Her first thought was of her plasma car. Sophie's mother and grandmother were exhausted, so it was Michel who played with her. "I was still pretty sore, but I went and chased her while she drove around."
Michel's physical and emotional recovery from the transplant took time. But looking back at his experience, he has no regrets.
"I would definitely do it again. It's really not that bad. You know what was bad? Seeing Sophie on dialysis. I would do this over and over again. The pain is nothing compared to what I see her do every day now. Her ability to grow as a person, to become who she is, giving her a second chance at life, and seeing her hit her milestones. Even though there are still developmental challenges, she's pretty much caught up to her age now."
From the outside, you would never know that Sophie was once so sick. She is playful, full of energy and extremely curious. Although it is likely she will need another transplant or two in her lifetime, Sophie is able to enjoy her childhood.
"She's still medically fragile but it's more manageable. We're average parents now, she gets a real childhood, and it's the transplant that gives us that freedom. You never realize how much of an impact it has until you actually live it. We're living it."
