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.
The first clue came with a murmur.
At a mere week old, Joe LaRocca was diagnosed with an extraordinarily rare heart defect. Both ventricles were reversed.
Fortunately, with this particular defect, the arteries are reversed too, essentially “correcting” the abnormality. That’s where it gets its name — congenitally corrected transposition of the great arteries (CCTGA).
In a normal heart, the demanding duty of pumping oxygenated blood into the body is handled by the left ventricle, and the right ventricle pumps blood a short distance into the lungs. But Joe’s heart was far from normal.
“The right ventricle is not meant to do the harder work,” says Dr. Elizabeth Blume, Heart Failure and Heart Transplant Program medical director at Boston Children’s Hospital. “Since the ventricles are reversed in patients with CCTGA, over time, this muscle tires out.”
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.”