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.” …