When ‘normal’ became everything: Expert transplant care offers new hope after heart failure at 25

Throughout his infancy and childhood, Lavalley had received pediatric cardiovascular care at Boston Children's Hospital. As he moved into young adulthood, he struggled to stay on top of managing his healthcare - a common challenge for young people with complex medical needs transitioning to adult care.

When his health started to worsen last year, Lavalley made several visits to local emergency rooms, only to be told that he was fine. That's when he and his family knew it was time to seek more advanced care.

They returned to Boston Children's last fall, where Lavalley was referred to the Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Program, a longstanding partnership between Brigham and Women's Hospital (BWH) and Boston Children's to provide lifelong cardiac care to people born with heart defects and pulmonary hypertension.

"Brandon was critically ill when he presented to Children's, initially with what looked like worsening heart failure, and he quickly spiraled from there," remembered Michael Givertz, MD Open external link in a new window , medical director of Heart Transplant and Mechanical Circulatory Support at BWH.

At Boston Children's, Lavalley was quickly placed on extracorporeal membrane oxygenation (ECMO), a machine that pumps blood and oxygen for a patient when their own heart and lungs can no longer do so adequately. Once his condition was stable, he was transferred to BWH for consideration of an urgent heart transplant.

Lavalley said his memory of this time is hazy.

"Apparently, I had gone into cardiac arrest and was dead for 40 or 50 minutes," he said. "I don't remember much except that at one point I woke up on breathing tubes, feeding tubes - it was awful. I remember being very frustrated all the time because I would want to move or drink water, which obviously I could not do."

Too sick to go home, Lavalley remained hospitalized at the Brigham for more than four months - on and off ECMO, as well as other forms of temporary life support and IV medications.

Such a prolonged hospitalization was grueling, both physically and mentally. At one point, despair sunk in.

"There was a time in my stay that I wanted to sleep all day. I didn't want to get out of bed anymore," Lavalley recalled. "I was going into a slump because I was tired of it all."

The genuine compassion, heartfelt support and warm companionship of his care team helped pull him out of it, Lavalley said. During his time at the Brigham, he had grown especially close to cardiologist Mike Landzberg, MD Open external link in a new window , immediate past and founding director of the BACH Program.

"He was there for me for a while," Lavalley said. "He ended up coming into my room one day and was like, 'Dude, you are not sick enough to be sitting in bed all day like this. You can move. You can use your legs. Not everyone here can.' He really lit a spark in me."

Soon after that conversation, Lavalley said, it was like a switch flipped. He started walking laps around the floor, often stopping to have friendly chats with staff and other patients. His nurses cheered him on and hung a chart in his hospital room to track how many laps he'd completed.

"When Brandon came to us, he was still kind of a kid. He matured so much in his time here, and the nurses really took him under their wing and taught him a lot about caring for himself," Givertz said. "We didn't give up on him. We didn't send him home. We were on his team the whole time. And in the process, he developed a second family."

This past February, after more than 100 days in the hospital, Lavalley and his family received the news they had all been waiting for: A suitable donor heart was available.

"At that point, he'd had enough time to 'pre-hab.' His condition had stabilized, he was able to walk around the floor, and his nutrition improved with the support of Nutrition Services," Givertz said. "He went into surgery probably about as good as he could be, and he really did very well. He was discharged within a couple weeks of surgery, which would be a very short timeline for someone who came in as sick as he did."

In addition to cardiac rehabilitation closer to home, Lavalley will receive lifelong care from the Heart Transplant Open external link in a new window program's interdisciplinary team to ensure his continued health.

Lavalley, now 26, said he is eager to get back to his regular routine and wants his organ donor's family to know how grateful he is for this precious gift.

"I feel really good - just, like, normal," he said. "I want them to know that I'm using it well, and it's still a healthy heart."