Congenital heart patient receives unexpected transplantAug. 12, 2020, 3:14 PM
by Matt Batcheldor
For years, doctors told Piper Davis it was impossible to have a heart transplant. She was born with just one ventricle, or pumping chamber, instead of two. A generation ago, such patients didn’t survive into adulthood. Over her 35 years, Davis had multiple surgeries, including a Fontan, the procedure given to pediatric patients with one ventricle.
“Even in my 20s, transplant was never an option,” said Davis, who lives in Cleveland, Tennessee.
Imagine her surprise in May 2020 when she not only received a new heart but a new liver at Vanderbilt University Medical Center, the first known dual heart and liver transplant involving Hepatitis-C-positive organs in a single-ventricle patient.
“I got the call Wednesday night the 13th, and I had organs and I was transplanted Thursday, the 14th,” Davis said. “I was very shocked that I had organs in two days. Because they said it could be three months before you get organs, we don’t know. It was incredible. It was a miracle.”
Davis was one of three single-ventricle patients who have received new hearts during the COVID-19 pandemic. Indeed, VUMC never stopped such transplants.
“We’re still continuing to transplant these congenital heart patients and give them a second chance at life,” said Rachel Fowler, MSN, APRN, a heart transplant coordinator who works with patients prior to transplant as a member of the Vanderbilt Heart Transplant team.
As medical interventions improve and patients with congenital heart disease (CHD) survive to adulthood, they experience heart failure and must be transplanted. Fortunately, that is now possible.
“Though such transplants remain rare, they are becoming more common around the country and the program is growing rapidly at VUMC, the only location in Tennessee and one of a few in the South where such transplants are possible,” said Jonathan Menachem, MD, a transplant cardiologist and director of Advanced Congenital Cardiac Therapies (ACCT).
Menachem, assistant professor of Medicine and Pediatrics, said there have been 16 transplants of adults with CHD in the last 2.5 years.
This includes eight single-ventricle patients, three of whom received combined heart and liver transplants. Three of these were completed during the pandemic.
The Vanderbilt Transplant Center has the largest heart transplant program by volume in the nation and helped pioneer the use of Hepatitis-C positive organs, which are quickly cured of the disease when the organ recipients take a short regimen of medications. This has allowed the program to transplant more patients as it allows access to more donors.
The team has published data in the Journal of Heart and Lung Transplantation that shows that adults with CHD benefit from undergoing transplantation at high-volume centers such as Vanderbilt.
“Patients who survive the first year after their transplant have outcomes equivalent, if not better than, non-congenital patients,” Menachem said.
Davis said her previous treatments were aimed at keeping her as healthy as possible, but it was like putting a bandage on a wound that doesn’t heal.
Her condition worsened as she was diagnosed with cirrhosis of the liver about a year and a half ago, something that eventually arises in CHD patients.
“Things kind of started going downhill,” she said. “I always had fatigue and been tired, always. I was having to take naps two and three times a day. A lot more arrhythmia. And shortness of breath, dizziness, things like that. I couldn’t do a lot.”
She agreed with her doctors and nurses that she wasn’t going to improve without a transplant, and that time was of the essence because if her condition deteriorated too much, she wouldn’t be a candidate for one. Meanwhile, the COVID-19 pandemic was gathering steam.
Considering everything she had gone through with her heart, Davis said she wasn’t especially scared about COVID-19.
She was isolated at home prior to her transplant, but felt confident about coming to Vanderbilt for her transplant after being informed of VUMC’s policies. “I really wasn’t worried about it at all,” she said.
Due to the visitation policy at the time, her husband, Stephen, was able to see her right before the transplant and immediately afterward. But then she was isolated from him for eight days.
“That was really, really tough,” she said.
Her nurses helped her through the difficult period. “They would sit and talk to me and hold me if I was having a bad day,” she said. “They were just really awesome. They really helped.”
Davis said she immediately felt better with the new organs. “The day after surgery I was up walking the halls and everything. I’m one of those who can’t still and I can’t lie in bed. I was just determined to do what I had to do and get out of there.”
Davis’ prognosis is excellent. She now feels well enough to get out of the house, wearing a mask, of course. She said she has to do something with all of her extra energy.
“It’s a huge change,” she said. “It’s incredible and overwhelming.”