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.
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.”
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.
“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.” …
Twenty-two-year-old Bobby Donovan was diagnosed with Cystic Fibrosis (CF) at 4 months old. He was relatively healthy for someone with CF. However, in November of 2008 his health began to deteriorate. Every three months or so, he was admitted to Boston Children’s Hospital for two to four weeks at a time. In April of 2014, with his lungs not expected to last the year, Bobby received the double lung transplant, which not only saved, but transformed his life. One year following surgery, he shares his remarkable story.