The Wait for a New Heart
Sep 02, 2019 Cedars-Sinai Staff
By age 29, David Brown desperately needed a heart transplant. But first, he had to wait more than a year—and be 400 miles from home.
David Brown can sum up his heart transplant experience in one sentence.
"Waiting is the worst, transplant is hard but it's soooo worth it," says David, who lives in St. George, Utah, with his wife, Amanda, and 2-year-old son, Camon.
"I was always afraid of my other heart—that it was going to pitter out or go into some bad rhythm, or my defibrillator's going to shock me. This is the first time I've felt confident exercising with my heart. It's a good feeling."
David, 31, always knew he would one day need a new heart. He was born with two congenital heart defects—transposition of the great vessels and pulmonary stenosis—which didn't allow enough oxygenated blood to circulate through his body. For the first 15 years of his life, he averaged one heart surgery a year.
Still, at the end of 2017, when his doctor said it was time to talk transplant, it was a blow. He was 29.
"I was like, wow, this is it," he says. "I always thought it was going to be much later down the road."
Waiting for the phone to ring
Leading up to that talk with his cardiologist, David and his wife had already been through devastating times.
Their first baby, Adalyn Grace, was born in 2015 with severe congenital brain anomalies and lived just six months. In fact, just weeks after she was born, David—who was finishing graduate school at the time—went into heart failure.
"I can't go to the hospital!" he told an urgent care doctor. "My wife and baby are already there."
The doctor insisted, and David was admitted to the hospital. He recovered, but by early 2018, his heart was so weak, he had to quit his job as a physical therapist. And when he underwent preliminary tests for transplant, there was more bad news.
Because of the many blood transfusions he'd had in his life, David had high levels of certain antibodies. That meant he would reject more than 90% of donor hearts that would become available in the Utah area.
David's best hope, the cardiologist told him, was to go to Smidt Heart Institute at Cedars-Sinai. Because Los Angeles is more diverse, he would have a better chance of finding a match. Cedars-Sinai also could provide a special medicine to reduce his antibody levels.
David and Amanda made the 6-hour drive to Los Angeles, and soon, he was on the transplant waiting list at Cedars-Sinai and receiving infusions of the antibody medicine. Meanwhile, he and Amanda lived in short-term rentals around Los Angeles with baby Camon and waited for the phone to ring.
They waited—and waited.
Eventually, doctors recommended they return to Utah to wait.
"It was nice to go home, but it was disheartening, too," David says. "You're just waiting around, feeling sick. It got to the point where my wife had to push me around in a wheelchair."
In February 2019, David reached the one-year mark of waiting. His condition worsening, he was admitted to Cedars-Sinai and moved up higher on the list. On April 6, 2019, he received a new heart.
Because surgeons had to cut through a lot of scar tissue in his chest, he needed nine blood transfusions during transplant.
Waking up afterward, "I felt like I was dying," he says. "For the first couple of days, I was thinking I did the wrong thing."
But within a week, David was walking farther than he had before surgery. He could feel his new heart beating strong. Each day, he felt a little better.
Four months later, he's doing great. He's started running a little, and he's chasing Camon around the yard with ease. He's looking forward to working again and doing things he's long dreamed about, like bike rides with the whole family.
"I was always afraid of my other heart—that it was going to pitter out or go into some bad rhythm, or my defibrillator's going to shock me," David says. "This is the first time I've felt confident exercising with my heart. It's a good feeling."
Patient's Survival Guide to Waiting for a Heart
David knows firsthand that waiting for transplant can be agonizing. Here are his tips for survival:
- Stay as healthy as you can. Whatever you can do for yourself, do it—even if it's just eating better or walking a little bit.
- Find a new hobby. David took up watercolor painting—something he could do at rest—and it's become one of his favorite activities.
- Ask for help. "You can't do this on your own," he says. David credits Amanda as "the strength of our family," but adds that they received incredible support from friends, relatives, their church and their community.
- Make a dream board. David's sister created a collage showing all the activities he and Amanda dreamed about after transplant—like those family bike rides. The board became a beacon of hope.