When they boarded a flight to Hawaii, Nancie and Bill had no idea their 12-year-old daughter was days away from being diagnosed with end-stage renal disease (ESRD). It was spring break and everyone was excited for the family adventure to begin.
The day before the trip, Bella saw a local orthopedic specialist after feeling pain and weakness in her legs. She otherwise felt well, but with softball season approaching, she didn’t want to risk injury. The specialist drew blood and was hoping to have some answers for the family upon their return home to Connecticut. …
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.”
An organ transplant is a life-changing event extending far beyond the operating room, the clinics and the hospital walls. Read about five children, one young adult and their families, whose lives were forever changed by the Pediatric Transplant Center at Boston Children’s Hospital.
Lydia’s liver transplant, a mom’s gift
Dawn Cavanagh gave her daughter life twice — first when she was born and, again, when she gave 13-year-old Lydia a piece of her liver last summer. The donor-approval process, which occurs with Boston Children’s partner Lahey Hospital & Medical Center, required hours of medical screening, including an interview with a social worker, who asked if Dawn expected anything in return for being Lydia’s liver donor. “And I said, ‘Of course I expect something,’” explains Dawn. “’I expect her to live a long and happy life, and I expect her to be with me for a long time.’”
More than a year after her liver transplant, for Lydia’s birthday, Aug. 1, the Cavanagh family went on Lydia’s Make-A-Wish trip, a Disney cruise to the Bahamas. “We had so much fun,” says Dawn. “She’s a happy kid. She has dreams. She wants to be a transplant nurse, and she wants to work on 10 South at Boston Children’s Hospital.” …
We are honored U.S. News & World Report has named Boston Children’s Hospital the #1 pediatric hospital in the nation. It’s an opportunity for us to step back and celebrate your amazing families and your special moments — your baby steps, birthdays and graduations. You are the reason we do what we do.