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“Another huge part is providing emotional support,” Legette says. “Families get into a cycle where they think a heart is never going to come. We become their family.”
Celebrations and sorrows
The hospital has done 250 transplants since 1990, she says, and 200 were successful. Legette typically has 38 to 40 patients. “I’d say three-fourths of my patients I know intimately. I’m pretty attached to the kids that are close to my son’s age.”
In April, one of Legette’s transplant patients, an 18-year-old girl, passed away.
“It was devastating,” Legette says.
There are days when she goes home and cries to her husband, but she tries to leave the negative experiences at the hospital and focus on the positive and rewarding side of her job.
It’s not always easy for transplant coordinators to detach themselves from their work because they quickly can become a central focus of a family’s life.
On a recent Friday, Sarah Clunie, RN, BSN, the cardiomyopathy/heart transplant coordinator for Texas Children’s Hospital and Baylor College of Medicine, was paged 74 times.
“My pager is on 24/7, 365 days a year,” she says, and it’s not unusual for parents to call her in the middle of the night if their child becomes ill. She typically works 60 to 70 hours a week, not counting the middle-of-the-night phone calls.
Texas Children’s is the largest pediatric hospital in the United States. The heart center performs about one heart transplant a month, Clunie says, but as of September already had performed 15 transplants this year. Like Legette, she manages the heart transplant patient from diagnosis into adult life. Texas Children’s performs transplants on newborns to 17-year-olds but provides follow-up care until the patient turns 24.
“That’s what’s rewarding with this job,” Clunie says. “You celebrate with the patient. You cry with them. You become a big part of their life.”
One of the exhilarating experiences is making the call to tell a family a donor heart has been found. Clunie said she gets goose bumps every time. But a transplant isn’t a cure, and that’s one of the hardest parts of the job.
There is no way to predict how long a transplant can prolong a life. The average length of survival time for all heart transplant recipients is a little longer than nine years, according to the American Heart Association. Based on actual transplants performed between 1996 and 2001, the Organ Procurement and Transplantation Network found children, from newborns to 17-year-olds, have an 84% to 89% chance of surviving a year after receiving a new heart. The five-year survival rate for that age group ranges between 70% and 75%.
“I had one little guy who waited in the hospital seven months for a transplant,” Clunie says. “The day he got his heart, he was so excited. He was a child with a wonderful spirit.”
After his transplant, Clunie says she worked hard to get him home in time for Christmas, and she did. In the end, though, he didn’t make it.
“Sometimes, despite everything you do, it doesn’t work out,” Clunie says.
She depends on her faith to see her through the difficult losses, and she focuses on the times of celebration. Every year she goes camping with 120 cardiology patients from the hospital in a program she helped start called Camp Pump It Up. The free camp-out, sponsored by the heart center, often is the first time young heart patients are away from their families and have a chance to enjoy outside physical fun like rope climbing and swimming. Seeing a child who had been struggling for life get a chance to run and play is one of the biggest rewards.
“Despite the many hours and lack of sleep, I wouldn’t trade my job for anything,” Clunie says. “Each day you come to work, you don’t know what you’re going to encounter.”
Donna Hemmila is a freelance writer.
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