There is a spot on the Boston Marathon route called “The Liver Mile.” It’s where the grind begins, where the storied course starts to tests runners and where legs often weary from pounding 16.8 miles of punishing roads.
Yet, it’s also where 21-year-old Tom Williams, a liver transplant recipient from Dracut, Massachusetts, first fell in love with the idea of running the Boston Marathon.
“I wasn’t thinking about the difficulty of it,” he says. “I was just thinking, I want to run for other people who are sick.”
Located in front of Newton-Wellesley Hospital, “The Liver Mile” is where volunteers hand out water and gather in support of the Run for Research team, which raises money to benefit the American Liver Foundation. For years, while someone else ran for him as part of the patient-partner program, Tom was a spectator on the sidelines. …
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.”
For the past three decades, the team at Boston Children’s Heart Center has medically and surgically managed Joe’s condition. And at 33, his heart is still ticking. …
Although her parents were warned she might not breathe when she was born, the moment Francesca Durkos came into this world, she let out a gutsy cry.
“It was music to our ears,” says her mom.
Michelle Carino Durkos was 40 weeks pregnant when she learned there was a tumor attached to her unborn daughter’s heart — a tumor so large that doctors near her home in Pensacola, Florida, were unsure if the baby would live.
“It was a shock, because at 20 weeks everything was normal,” says Michelle. “We had a wonderful ultrasound; we saw all four chambers.”
Yet, call it a mother’s intuition, Michelle knew something was wrong.
“The whole pregnancy I had this strange feeling. I didn’t want to upset her, so I’d sleep sitting up, as if she was fragile — as if she was in distress.” …
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.”