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.”
Dawn Cavanaugh carefully and calmly navigates the roads of Shrewsbury, Massachusetts, with a bus full of kids, bringing them to school and safely back home again at the end of each day. As a bus driver, it’s the methodical beat of her everyday life.
Last year, as a mom, she was navigating a very different journey, one in which she did everything in her power — including giving a portion of her liver — to bring her daughter Lydia home safely.
“As far as I’m concerned, my role in this life is to care for my kids,” says Dawn. “And if I have to give a part of myself to do that, that’s all there is to it.”
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 U.S. As we celebrate this honor, we’re reflecting on some of the greatest children’s stories ever told — stories of the patients and families whose lives touch ours and inspire us.
Two of those patients are “liver brothers” Malambo Mazoka-Tyler and Brent Groder.
Malambo and Brent are, by all standards, oceans apart.
Zambian-born Malambo is nearly two. His world, one year after a life-saving, split-liver transplant, is all about walking and talking, laughing and dancing and figuring out why the sky is blue and why cows moo — a typical toddler. …