Playing youth hockey and Little League in the spring of 1988, I started to become easily fatigued. I became very weak and could no longer run around. By May, a visit to my pediatrician resulted in a trip to the Boston Children’s Hospital Cardiology Clinic on Fegan 6 and the first of many cardiac catheterizations I would receive in my life.
The results of that first procedure were shared in my corner room across from the nurses’ station on 6 East (the cardiac step-down at the time): I would need a heart transplant for cardiomyopathy. It was Friday the 13th. I was 10 years old. …
There are more than 80 children currently waiting for life-saving organ transplants at Boston Children’s Hospital. The Pediatric Transplant Center team is grateful for the donors who give these kids a second chance.
Transplant recipients typically feel stronger and more energetic following transplant recovery. But returning to regular activities, sports and travel can be challenging. A few “transplant moms,” who’ve already been through the experience, share their wisdom and advice.
Charlene, mom to Brent, 19, liver transplant recipient
Planning a first vacation post-transplant is easier said than done. Charlene Newhall knows. And, she has a handful of advice, following a family summer trip to Arizona from their home in Maine:
Work with your pharmacy to ensure you have enough medications.
Research the closest major hospitals. “I was shocked to learn that two of the labs I called didn’t even check immunosuppressant levels.”
Know your insurance coverage. “If we needed labs or anything medical we knew it would be out of pocket as our insurance is MaineCare. It’s a risk we took and we were prepared!”
Call your transplant team to help you schedule immunosuppressants accordingly. “If there was one thing I stressed about, it was the time change with the dosing since Arizona is three hours behind us.”
Prepare for your flight. “Masks are very important when flying. I was shocked at how many people flew sick. I wiped everything down on the plane with Lysol wipes before we sat down.”
Don’t overly stress. “Make your vacation about memories, not about medical issues.”
In the foyer of the Geraghty house in Bedford, New Hampshire, 20 red heart-shaped balloons and a wall-to-wall banner welcome Erin Geraghty home from college. It’s not her birthday — she’s 21. It’s not her graduation — she’s a first-semester University of New Hampshire senior. And it’s not Valentine’s Day.
It’s her 20th year with the same heart.
Born with idiopathic dilated cardiomyopathy — a condition that causes the heart to pump blood inefficiently — Erin received a heart transplant at Boston Children’s Hospital when she was just 1 year old.
Her sister Katie, two years her senior, remembers Erin’s frequent visits to the hospital. “We didn’t understand why mom wasn’t with us, but we knew it was important.” …