The beat goes on: Woman meeting daughters of Nova Scotian who gave her his heart

via The Chronicle Herald

Five years after receiving the heart of a Nova Scotia man, Julie Lyons will meet his two daughters who made the life-saving transplant possible.

At about 1 p.m. on Friday, passersby at Toronto Pearson Airport could run into an emotionally charged meeting between the three women.

Technically, Lyons is a stranger to Belynda Garcia and Carolyn Cox-Disney. But the heart beating inside her chest is very familiar to the sisters: It originally belonged to their father, Robert John Cox.

Cox, who lived in Musquodoboit Valley, died on April 15, 2011 from a brain injury caused by a fall.

Robert John Cox, who died in 2011, donated his heart to  Julie Lyons, saving her life. (CONTRIBUTED)

The organ donor permission section of his Nova Scotia Health Card renewal form was unsigned, but even in their grief his daughters allowed his heart to be donated. His liver and kidneys were also donated.

“When my dad passed away, it was probably the hardest time in my life,” Garcia said over the phone from Calgary on Wednesday.

“It was just like a little ray of sunshine, knowing that my dad’s heart actually saved somebody’s life. It’s an amazing feeling.”

Garcia and Cox-Disney told the Chronicle Herald that as the meeting with Lyons nears, they’re running the gamut of emotions from excited to nervous.

The same is true for Lyons. “It won’t be real to me until I actually see them,” she said Wednesday.

The three have written to each other since 2011. But Lyons was the first to try verbal communication.

Cox-Disney emailed Lyons in September, inviting her to their Thanksgiving dinner in Calgary. Lyons immediately called to thank her for the generosity. She couldn’t attend the dinner, but she invited them to join her in Toronto for a Christmas party celebrating her five years as a survivor.

She’s looking forward to hugging them, and thanking them in person for all they’ve given her.

And, if they like, she wants to give them both a chance to feel their father’s beating heart.

“It might be a little harder for them than for me, because I’m used to the thought of having someone else’s heart in my body. But for them, I must seem like a ‘virtual person,’” Lyons said in a phone interview.

“For them to actually see me, and realize that his heart is here, I think it’s going to be really a huge thing for them.”

Since the transplant at the QEII in Halifax, her new heart has been going strong.

Now 61, the retired flight attendant moved to Toronto last year. She has had no complications or relapses, and walks about 10-12 kilometres in the bustling city on a daily basis.

Lyons was born with hypertrophic cardiomyopathy — a congenital disorder that thickens the heart muscle and eventually impedes the flow of blood through the heart. The problem didn’t become serious until 2004, when she had a pulmonary embolism.

She recovered and continued doing the things she loved — gardening, volunteer work and attending dance classes — for three or four years.

The downhill roll started once the fatigue and pain set in. She couldn’t get up for six months because she was short of breath, had congestive heart failure and wasn’t eating due to accumulating fluid. She attempted to continue her routines, but this led her to collapse on the stairs after gardening and even to crash her car.

In 2008, Lyons received a defibrillating pacemaker to regulate her heart and shock it back into rhythm when necessary. By 2010, a left-ventricular assist device had taken over part of her heart’s pumping duties. It was meant to strengthen the heart and act as a bridge toward the end-goal — a transplant.

But the next year, the assist device became infected and Lyons’ condition grew so serious that she rose to the top spot on Canada’s transplant list.

A day after Cox died, Lyons received his heart.

She was told she could write a thank-you letter to the daughters, but she had to keep it anonymous and only use her first name.

From there, she decided to print up her story, set up a table at the Halifax Seaport Market, and share the importance of organ donation with any passersby willing to listen.

During an event for Organ and Issue Donation Awareness Week, a woman approached her. It was Cox’s sister. His daughters reached out soon after and they’ve been in touch ever since.

“I don’t even think about it as being about me. I think it’s about my story. Our story,” Lyons said.

The three women have spent the past few years spreading awareness about the benefits of organ donation.

According to the Canadian Transplant Society, too many people die waiting for an organ. The society says more than 1,600 Canadians are added to organ wait lists every year. While about 90 per cent of Canadians support organ and tissue donation, fewer than 20 per cent make plans to donate.

Garcia said it’s best to talk to people about it, let your family know what you want, and sign the organ donation card.

And don’t assume that you can’t be a donor, she said, because there are different rules at different times.

“And don’t be afraid of it. It’s not weird or scary. You’re saving somebody’s life,” she said. “And if you can’t use your heart, why would you deny someone else using it”?

And plus, she said, it’s “pretty neat” to know her dad’s heart is still beating.

Both daughters say they were really close with their father and it took years of grieving to get to the point where they were ready to meet Lyons in person. Cox-Disney said she really has no idea how she’s going to react.

“I do know that I’m grateful that a piece of my dad is alive and helping someone else,” she said.

“I’m not saying goodbye to my dad, I’m saying hello to somebody else.”

Original publish date: Dec. 1, 2016

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