Meet the transplant competitors of Team Alleghenies
The ‘Special Olympians’ you don’t know about:
Stephanie Heard really loves her job, but it can “open a can of worms,” as it did at a family dinner a few weeks ago.
An in-law asked what exactly she does at CORE, the Center for Organ Recovery & Education. She’s a tissue call center representative, where she gains permission from potential donors’ families. But how she finds out about those families — that CORE is notified of every hospital death, not just of those people who indicated “organ donor” on their drivers license — disturbed her relative.
It was a respectful conversation, but triggering nonetheless.
Working at CORE isn’t just Heard’s job, it’s a chosen mission. Her brother, Vincent, died of a drug overdose in December 2016 and passed on the gift of his organs, a choice made by her family, in part, so, “He didn’t have to pass away with our last memory of him being that he died of a drug overdose.”
In addition to his donation, Heard’s choice to join CORE forced even more good from a crushing situation. And she took another step in that direction in July, when she attended the Transplant Games of America — in San Diego this year — with the group of organ recipients and donor families called Team Alleghenies Transplant, representing Western Pennsylvania and West Virginia.
It’s the Olympics, of sorts, for those who’ve lived through a transplant on either side of the miraculous ordeal. There are athletic events (such as cycling and track), skill events (such as darts and corn hole) and 60 special events meant for the 40 national teams, and few
international ones, to mingle and celebrate each others’ presence, which in itself is a victory, especially for this group.
While Heard sometimes shies away from conversations about her job when in mixed company, she’s now shouting this part of it from the rooftops.
And she isn’t the only one.
More than medals
Luke Ball remembers how “hard” it was to be left out of activities as a child.
He was born with hypoplastic left heart syndrome, where one section of his heart never fully formed. Despite surgeries during his first few years of life, when he lived in Portland, Ore., his heart still couldn’t supply enough oxygenated blood to support him playing sports, as he saw his three brothers do.
His father sought a job in
Pittsburgh because of UPMC Children’s Hospital’s impressive reputation just in time for Luke, then 6½, to receive the heart transplant he needed.
With that heart came social support, as hospital staff made the family aware of networking opportunities for transplant families, and one of those was the Transplant Games.
Sports became a part of Luke’s recovery, diving into T ball and flag football. And in 2016, he participated in his first Transplant Games.
But despite his family’s competitive, athletic nature, they quickly learned these games weren’t really about winning.
This year, Luke, now 18 and living with no restrictions, competed in volleyball (which he plays as a senior at North Catholic High School), cycling, basketball and track and field. But he also played pickleball, though he never had before, simply because a member of his team didn’t have a partner. And his whole family calls the parade one of their favorite activities because of how they get to interact with others while waiting to walk the route.
“It isn’t about the quest to obtain gold medals, though Luke was very fortunate to have done so,” his father, John, said. “To be in that community with people competing in athletic events after sustaining transplants, and dealing with medications and the challenges that puts on your body, and still having the drive and passion to go out and compete, that’s what it’s all about.”
‘Planets had to align’
Nearly 20 years ago, a cyst behind Mike Natale’s knee led to the discovery of his kidney failure. His sister matched, and he received one of her kidneys.
That cut-and-dry account makes him joke that they have “no story.” That isn’t true, of course, but after connecting with other transplant families at the games since 2008, he’s heard movie script-caliber tales.
There was the teammate with a rare blood type whose mother-in-law passed away just as he needed a set of lungs, and she happened to be a match.
His own wife, Diana — also a member of Team Alleghenies — was so moved by her husband’s need that she offered one of her kidneys, and became part of the longest transplant chain in the Pittsburgh area, which included 18 people at last count.
Or at the 2010 games in Madison, Wis., he overheard a conversation while riding a bus to an event. A woman from South Carolina donated her firefighter son’s organs after he died in the line of duty. The man she was speaking to thought the date of the donation sounded familiar, since his friend received a heart from South Carolina just a day later. The man called his friend, confirmed the details, and right there on the bus, that woman spoke to the man who was living with her son’s heart for the first time.
And for longtime participants such as the Natales, these connections only gain strength, as they see some of the same competitors year after year.
“These reunions are just amazing to witness,” Diana said. “Seeing their daughters and sons getting married, having children of their own, and knowing they were able to do all of that because someone made the decision to donate their loved ones’ organs.”
A new place to call home
That uncomfortable exchange a few weeks back wasn’t the first of that type for Heard. Since joining CORE, she’s been surprised by how many people have complicated thoughts about organ donation.
But since attending the Transplant Games in July, she has a new reaction, albeit in her own head: “I would never have to explain this at the Transplant Games.”
There, people come right up and ask to hear each other’s stories. But the responses aren’t taxing: They don’t require long explanations or persuasions to see the situation through their eyes. While the details might differ, they’re all on the same team, and they’ve all already won.
“When I would talk to a recipient, even though they didn’t receive the gift from my brother, they were so grateful for donor families in general,” Heard said. “I found myself crying sad tears and happy tears throughout the week.
“It’s just really lovely to know that people are out there living life with their transplants, no longer disabled. It was really joyful.”