From flu symptoms to heart failure: A New York teen’s harrowing heart transplant tale
Further, about 500 New Yorkers on the list die every year because of a statewide organ shortage
There are approximately 2,000 children on the national heart transplant waiting list
“Anybody got a pulse? This child’s turning blue.”
The terrifying question seemingly stopped time as nurses and doctors tried to save 15-year-old Zachary Losee, whose heart had suddenly failed after coming down with flu-like symptoms.
It turned out to be just the beginning of a four-month medical odyssey from that harrowing moment at Strong Memorial Hospital in Rochester to Losee’s heart-transplant recovery at Blythedale Children’s Hospital in Valhalla.
Just days from returning home to Hamlin, Losee and his mother, Julie Prest, detailed the complex world of pediatric heart transplants and urgent efforts to end New York’s organ shortage.
“I’m just learning what this new life is going to be for Zach,” Prest said, revealing his painstaking rehabilitation and lifetime of diet, medication and health restrictions ahead. “It’s just, we are a team, and he has shown me how strong he is, so I have to be just as strong back with him.”
She also described her gratitude that Zach received a transplant in time, a rarity considering thousands of New Yorkers fill up organ recipient wait lists any given day.
Further, about 500 New Yorkers on the list die every year because of a statewide organ shortage, according to a USA TODAY NETWORK New York review of federal data in 2017.
Moreover, pediatric cases under 18 involve unique risks due to limited beds at select hospitals performing heart transplants.
Prest, for instance, had to choose between medical centers in Manhattan, Boston, Pittsburgh and Michigan as Zach’s condition deteriorated last fall.
Yet like many transplant patients, they had just one true option, Morgan Stanley Children’s Hospital of New York-Presbyterian, when all the moving pieces involved in organ transplants fell into place.
Months later, Prest still struggled to describe sitting at Zach’s bedside as he clung to life.
“It was just so overwhelming thinking about what’s going to happen to him…I’m just so thankful to have him back,” she said, her eyes welling with tears.
Flu symptoms to heart failure
Zach’s flu symptoms hit last October, prompting a visit to the emergency room and quick discharge as a typical cold.
Twenty four hours later, Prest knew something was wrong with her son.
“It was like Zach ran into a brick wall, he could hardly stand up and could hardly breathe,” she said.
They returned to the ER and were rushed by ambulance to Strong Memorial Hospital’s pediatric center.
What started as a flu scare ended up in the cardiac catheterization laboratory, an uncommon but dire scenario spotlighted by heart disease awareness campaigns.
After a six-hour procedure, Zach spent nearly three weeks on an artificial heart and lung machine as doctors treated his viral myocarditis, an infection that attacks the heart.
When medications failed, Zach joined the nearly 2,000 children on the national transplant waiting list in late November.
With pediatric heart transplants unavailable in Rochester, Zach was airlifted to Morgan Stanley Children’s Hospital to begin the likely months-long wait for a new heart, despite having medical priority status.
Remarkably, Zach received a heart in just 17 days in early December, leading to joyous family visits to the Manhattan hospital during the holidays.
But the celebrations soon gave way to a realization of the long recovery ahead for Zach.
“It’s really amazing how far he’s come to getting back to being that teenage boy I know,” Prest said.
Making a difference
Zach could barely sit up post-transplant, but less than two months later he stood and greeted guests recently at Blythedale Children’s Hospital before mounting a bicycle and pedalling away.
“It feels good and I feel like my old self again and I feel happier,” he said, reeling off a homecoming to-do list complete with a trip to Olive Garden and reunions with friends and family.
Zach also described plans to become a cardiologist and get involved in organ donor advocacy, having been inspired by Lauren Shields, a Rockland County transplant recipient turned pre-med student.
“All her stories just impacted me…just like me she had viral myocarditis and had to relearn everything,” Zach said.
Shields received a heart transplant at age 8 in 2009 and became the namesake for a state law that requires driver’s license applicants to check a box saying they would or would not like to register as an organ donor.
Previously, New Yorkers could simply skip the question and still have their license processed, a gap that reduced the likelihood of organ donations.
Nearly 9,500 people were on wait lists for organ procurement organizations in New York in 2017, USA TODAY Network reported. That made it the third-largest wait list in the country. New York also had the third-lowest donor registration rate.
Dr. Kathy Silverman, who treated Zach at Blythedale, described how Zach’s case underscored the stakes of ending New York’s organ shortages.
“It’s something that you think happens to older people but…this happened in a 15-year-old, it doesn’t get much scarier than that,” she said.
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