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Linda Rackham, Living Kidney Donor

Linda Rackham

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.'"


 

Jennifer Bieniek, Recipient of Living Donor Kidney Transplant

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."


 

Amanda Collins, Living Kidney Donor

Amanda Collins

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.

Amanda and her husband

"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."


 

Michel Pleau, Living Kidney Donor


Michel Pleau

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."

Michel and daughter

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."