‘Thank you for my life’: Canadians honoured for their work on organ transplants | CBC Radio

After Simon Keith received a heart transplant in the 1980s, he went on to a successful career as a professional soccer player — something unheard of at the time.

Now he’s been appointed to the Order of Canada for his charity work helping other young transplant patients embrace healthy, active and fulfilling lives.

“Once you’re transplanted, it’s this celebration and this rebirth and this new life. And then … you’re sitting in your living room, you’re like, ‘Holy cow, now what do we do?'” said Keith, who was among 99 new appointments announced by Gov. Gen. Mary Simon last week.

“My job is to say, let’s go party, what do you want to do? You want to go swimming, you want to go play the drums, you want to go hike? Let’s do that,” he told The Current’s Matt Galloway.

The former athlete founded the Simon Keith Foundation in 2012, to advocate for organ donation and provide financial support to young transplant recipients. Keith said he often meets parents who wonder how active their children can be post-transplant — and are astounded at the quality of life that can be safely achieved.

The way to say thank you … is to live a life of passion and purpose– Simon Keith

He said the recipients and their families always tell him “‘Oh, my God, Simon. I didn’t know we could do this. I didn’t know we could live this long. I didn’t know we could be this active,” he said. 

“It becomes really life-changing.”

According to the most recent figures available from the Canadian Institute for Health Information, 2,782 organ transplants were performed in Canada in 2021. On Dec. 31 that year, 4,043 Canadians were on wait-lists to receive a transplant. Roughly, that means that for every two transplants that occurred, three more patients were waiting their turn.

Getting back on the pitch

Born in England and raised in Victoria, B.C., Keith signed a professional soccer contract right out of high school, but contracted a virus that damaged his heart in his early 20s. At 21, months before he hoped to line out for Canada at the 1986 World Cup, he was told he would need a heart transplant.

While he missed the tournament, the operation was a success. He was determined to return to play, but said he didn’t receive a lot of support for the idea. Looking back, he understands the skepticism and thinks his youth and “naiveté” helped him get back on the field.

“Perseverance and desire are strong partners in that kind of journey,” he said.

When he got his career back on track, Keith stopped talking about his heart transplant because of a media fixation on his surgery.

“It didn’t matter if I played well, if I played bad … I was ‘the Heart Guy,'” he remembered.

That changed after a 2011 trip to meet the family of his donor, who he described as “the real heroes” in his story. The meeting prompted him to start his foundation.

“Everybody’s not built to be an advocate right out of the gate and everyone’s got to figure out their own path,” he said. 

After 32 years with his transplanted heart, Keith underwent a second successful operation, this time both a heart and kidney transplant, in March 2019.

He said he feels both fortunate and grateful to once again be the recipient of a family’s “courageous decision.”

“The way to say thank you in this whole thing, to the doctors, to the caregivers, to the donors, to the donor families, etc., is to live a life of passion and purpose,” he said.

“That’s our obligation as the grateful recipients; that’s our job.”

‘At the intersection of life and death’

An organ transplant is a miracle of medicine that happens “right at the intersection of life and death,” said Dr. Lori West, a pediatric transplant cardiologist in Edmonton, and the founding scientific director of the Canadian Donation and Transplantation Research Program. 

West was appointed an Officer of the Order of Canada in 2020, for her leadership in the field of organ transplantation and donation, and her breakthrough research in infant heart transplantation. Due to the pandemic, her investiture was delayed to last month. 

When she trained as a cardiologist in the late 1980s, there were very limited options for infants with major heart malformations. There was some hope on the horizon in the advances being made in transplant medicine, but a large proportion of babies died waiting for a suitable donor.

“It was really a death sentence for these families of babies born with these difficult problems,” she said.

In the ’90s, West’s research led to something that changed that. 

She realized that an infant’s immune system was malleable enough that it might not reject a transplanted organ based on blood type compatibility. (In adults, blood type is one of the factors that determine whether a donor and a recipient match).

Without the need for blood-type compatibility, the chance of matching patients and donors would greatly increase, she argued. 

“The first baby to receive an intentional blood-group mismatched heart transplant in the world was on Valentine’s Day 1996, and it was completely successful,” she said.

“That approach is now being used worldwide and has resulted in many more infants being transplanted than could have been before.” 

WATCH | Transplant was a scary word, until I gave my brother a kidney: 

Transplant was a scary word, until I gave my brother a kidney

Most people don’t think about live organ donation until it hits close to home. That’s exactly what happened to CBC’s Ioanna Roumeliotis when her brother suddenly needed a kidney transplant. She tells her family’s story of what it’s like to give and to receive a life-saving organ.

Donor families can feel ‘long-lasting comfort’

West sometimes receives letters from patients, including that very first baby, who is now in his late 20s.

“[He sent it] a few years ago on Valentine’s Day, which was his transplant anniversary, saying, ‘Thank you. I thought this would be a good time to reach out and say thank you for my life,'” she said.

“You stop in your tracks, and think that it makes a huge difference in people’s lives.”

West said that if someone wants to become a donor, the most important thing is to talk to your family. 

“That can have a huge impact because you told your family it was important to you to participate in organ donation, should something happen,” she said.

Families of the deceased can also feel a “long-lasting comfort,” she said.

“I’m thinking of a particular individual whose child sadly died and became an organ donor. She says ‘It’s life-saving to me every day, that I know of the contribution that my child made.'”