Heart Transplant Teens Form Bonds At Retreat

Teen Retreat

Sports, music, video games and food are staples most teens all share.

A group of teens who gathered at TY Park in Hollywood, Florida recently had something else in common: Each has received a new heart, or are currently waiting for one.

The teens took part in Joe DiMaggio Children’s Hospital’s Spring 2017 Biannual Pediatric Heart Transplant Teen Retreat.

The event, organized by members of the hospital's Pediatric Heart Transplant program team, gathers the teens twice a year so they could share experiences, learn about exercise and nutrition and ease their transition into adult cardiac care.

“The theme for this event is health and wellness,” said Pediatric Heart Transplant Coordinator, Megan Zakrzewski, ARNP. “While we will always be around to help them with their transition and care, here they learn how to take over their ownership of their health and wellness and how to advocate for themselves.”

Topics discussed during the recent event included healthy eating, the importance of exercise and the perils of caffeine.

For Daniela, who received her heart transplant in 2015, the event served as a way to be around others who endured the same health issues she did.

“It’s important for me to meet other teenagers who are going through the same struggles, because sometimes we tend to think we are alone, and that’s not true,” she said.

Lesly, who received his new heart last year, said friends he has made at the hospital are more than just a network of patients gathering together.

“We’re like a family now, and I am part of it now.” he said. “Feels amazing!”

Estefano, who received a transplant on his 14th birthday last year, felt ecstatic being with others with similar paths.

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"I found out there are so many things we all have in common," he said. "It's like we've known each other all along."

Also present during the retreat were medical staffers from Memorial Cardiac & Vascular Institute, who will ultimately continue to care for the teens’ health when they transition to adult cardiac care.

Adult Heart Transplant Manager Teresa Bueno, ARNP, said the event was a good way to form a bond with her future patients.

“This is a great opportunity to learn from each other and for us to meet in a non-clinical environment,” Bueno said.

Running in a tutu through an obstacle course was Ioana Dumitru, MD, the medical director of Memorial's Adult Cardiac Transplant, Heart Failure and Cardiomyopathy.

"This is another example of Memorial's philosophy of caring for everyone in our community from the tiniest to the oldest,"  she said. "We are trying to reach out to these teens today so that when it comes time, their transition is seamless."

The Pediatric Heart Transplant program and Joe DiMaggio Children’s Hospital opened on December 10, 2010, after receiving approval at the federal level from UNOS (United Network for Organ Sharing).

The approval of the program was the culmination of years of strategic planning, including the formation of a pediatric cardiac transplant team with the right mix of expertise and compassion.

Five days after program approval, the hospital’s first pediatric heart transplant was performed by the expert cardiac transplant team.

The hospital has performed 30 heart transplants since 2010.