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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."
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 thinking 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 the 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!"
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 a 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 to 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 a such a joyful feeling. It's what we're here for, to help other people."
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.'"
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. Everytime 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."
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 somber 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."