Stories about: double lung transplant

Double the joy, following heart-lung transplant

Heart lung transplant recipient Nicole with her twin Isabella
Nicole, left, and her twin sister Isabella

Nearly six months following a heart-lung transplant, Nicole Kouri makes a triumphant return to school, alongside her twin sister Isabella. It was a pact she made with her Dad back in August of 2015, while her friends were lying by the pool, soaking up the final days of summer, and Nicole was lying in a bed at Boston Children’s Hospital.

14-year-old Nicole was born with a ventricular septal defect (VSD) — otherwise known as a hole in the heart — and pulmonary hypertension, a serious condition associated with VSD that makes it difficult for blood to flow properly through the lungs.

Being sick was Nicole’s “normal.”

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Anatomy of a transplant: 13 lives, 17 days

Pediatric Transplant Center team
Some members of the transplant team, who performed a record number of transplants in January

It was “lucky 13” for the Boston Children’s Hospital Pediatric Transplant Center this January. Thirteen lives were saved by organ transplantation. Seven kidneys, three hearts, two livers and one pair of lungs were transplanted during the record-breaking month.

So what does it take to perform 13 transplants in 17 days?

“It takes a team,” says Dr. Heung Bae Kim, director of the Boston Children’s Pediatric Transplant Center. “We are very fortunate to have the talent and the resources necessary, so that when we call and say, ‘We have this many kids coming in for transplants,’ the team is ready, no matter what.”

Sixteen-year-old TJ Gregory is one of the lucky 13. He received a heart transplant in mid-January. He had been on the waiting list since October. Born with a serious heart defect called transposition of the great arteries, in which two main arteries leaving the heart are reversed, TJ has struggled with heart issues his entire life. At 40 days old, he had already undergone two open-heart surgeries.

“I was watching a playoff game on TV when Dr. [Elizabeth] Blume (medical director, Boston Children’s Heart Transplant Program) called and asked what I was doing,” says TJ’s dad Todd Gregory, “I told her I was watching the game and she said, ‘Do you think you could get it on the radio?’ As soon as she said that, I knew. I knew TJ had a heart.”

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In their own words: Six families share the impact of organ donation

This is the season for gratitude and giving, a time to celebrate friends, family, the end of one year and the beginning of a new one. But for a select group, it also is a time to celebrate one of the greatest gifts — the gift of life through organ donation.

Organ donation - Mickey

Mickey was born with a unique combination of congenital heart defects and spent most of his early life at Boston Children’s. He was one day shy of 6 months old when he received his heart transplant, and his family is grateful for every day since. “Mickey has shown us what courage and resiliency look like, and his transplant has taught us the true meaning of giving. He has touched so many lives and because of him, we have met so many amazing children and families, whose hearts and hopes far surpass their diagnoses.”

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Mapping a way to medication adherence

Eighteen-year-old Maggie Mansfield, a communications major at Boston College, is a two-time double-lung transplant recipient — once, at age 4, due to a condition called pulmonary hypertension in which blood pressure in the arteries of the lungs is abnormally high, and again at age 7, when her body rejected the first transplant. Since then, Maggie has remained relatively healthy due in part to her strict medication regimen.

Maggie Mansfield
Maggie Mansfield

“Timing is the most challenging part of taking my medications,” Maggie says. “As I get older, I get busier. It’s not always easy to stop what I am doing and take my pills, but I try to keep my timing the same so I don’t throw off my labs.”

Medication adherence is critical to the long-term health of an organ recipient. But taking upwards of 20 medications per day is often overwhelming, particularly for adolescents and young adults as they become more independent.

“I equate it to learning how to drive a car,” says Kristine McKenna, PhD, a psychologist in the Boston Children’s Hospital Pediatric Transplant Center. “We don’t just toss over the keys. There are a lot of steps to learning — getting a learner’s permit, practicing driving with a parent. And, again, we don’t just send them out to drive across the country when they get their license.”

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