Article in the Boston Globe
By Vivi Smilgius Globe Correspondent,Updated October 6, 2023, 11:41 a.m.
David Kornwolf was visiting his wife’s grave on a Sunday in early September when he received a call that would save his life.
But he didn’t know it — and hit decline.
The call had come from Tufts Medical Center, and once doctors got a hold of him, Kornwolf heard the news he’d been desperate for: A heart for his much-needed transplant was available, if he could get from his home in Oxford to Boston immediately.
But Kornwolf, 64, needed a ride, since he wouldn’t be able to drive himself home after the procedure. He had just gotten a new phone the day before with no saved contacts to call for help. Rideshare apps were prohibitively expensive, and the local limousine service was closed for the Labor Day weekend.
That’s when the stars aligned for Kornwolf again. He remembered a business card he received on a visit to the hospital. It belonged to Jay Toland, a heart transplant survivor and volunteer for the HeartBrothers Foundation — a Marlborough-based nonprofit that serves as a support group for heart failure patients and their families.
With his other options exhausted, Kornwolf called Toland at 4:30 p.m.
“I offered to pay him the couple hundred bucks it would’ve cost me to Uber, but he just said, ‘You owe me nothing, and I’ll be there in 20 minutes,’” Kornwolf said.
Sure enough, Toland drove Kornwolf from Oxford to Boston, despite the two barely knowing each other. Kornwolf received a new heart the next day and was sent home 10 days later — “no pain, no side effects, walking, and talking,” he said.
“They call me the unicorn because I’m a one-in-a-million shot,” Kornwolf said. “I’m extremely blessed. I can’t even begin to tell you how great I feel. Between my wife and God, someone’s watching out for me.”
On Sept. 3, that someone was Toland. Volunteering with HeartBrothers, he is a key part of a network that works to support survivors as they navigate heart failure and its aftermath. Toland himself suffered from heart failure and spent 194 days in the hospital awaiting the heart transplant he received in April. He said that, while the medical staff saved his life, they didn’t live through the turmoil of waiting or the aftermath of receiving a heart transplant. This is where HeartBrothers comes in.
“We’re not doctors, we’re not counselors, but we’re patients,” Toland said. “The only ones who know what it’s like are ones who go through it.”
HeartBrothers co-founder Pat Sullivan said volunteers like Toland often encourage those who have recently received transplants to write letters to the donor’s family. He added that survivors often develop meaningful relationships with their donor’s family.
“It’s really common that people have a transcendental moment after a heart transplant because you’ve been given a gift of life,” Sullivan said. “Our volunteers kind of have an epiphany that, once you get something like that, you have to give back.”
Sullivan, who is also a heart failure and heart transplant survivor, said he and cofounder Bob Romer decided when they were hospitalized and awaiting transplants that if they made it out alive, they would give back. That resolution has motivated them for nearly a decade, as the foundation has grown to be a wide-reaching network for patients and their families in New England and upstate New York.
In addition to webinars, support groups, and grants to transplant receivers, HeartBrothers acquired two one-bedroom apartments, which it rents for just $50 a night to families of those hospitalized for heart failure. The HeartBrothers House was set up in the foundation’s fifth year of operation and has been full nearly every day since, Sullivan said.
He said HeartBrothers hopes to acquire more rooms in the future and plans to continue providing grants and support. Sullivan also hopes to raise more awareness of heart failure and its commonality and to push for innovation.
“We’re not looking to take over the world,” he said. “We just want to increase our footprint.”
The group’s support meant everything to Kornwolf, who was navigating a dramatic health journey.
Kornwolf went in March to UMass Memorial Medical Center thinking he had pneumonia. Doctors told him the situation was much more dire: His heart was “shredded.” His ejection fraction ratio — the percentage of blood pumped out of the heart with each heartbeat — was between 5 and 10 percent. A normal heart’s ejection fraction ratio is at least 50 percent, according to PennMedicine at the University of Pennsylvania.
Kornwolf was later transported via MedFlight to Tufts Medical Center in Boston, where he was admitted to the ICU with critically low blood pressure and 40 doctors analyzed his heart, he said. After more than two weeks at the hospital, Kornwolf joined a list of people waiting to receive a heart transplant. He received the lowest-priority designation and prepared himself to wait months or even years for a new heart.
“[Doctors were] telling me my heart is basically junk, and I didn’t know if I was going to make it,” Kornwolf said. “But, even though my heart was bad, there were much higher priorities.”
Less than a year after he joined the waitlist, Kornwolf got the call for a heart transplant from a perfect match candidate and received a new heart on Sept. 5. In the days since his surgery, Kornwolf has been fully focused on his recovery.
“I’ve made a commitment to myself, the hospital, the doctors, and the person who gave me their heart that I’m going to take care of this heart,” he said.
But Kornwolf noted that his gratitude does not come without other complicated emotions. His new heart came from an addict who died of a drug overdose, he said, and he’s aware of what it took for him to receive a second chance at life. Some days, Kornwolf said, it feels “pretty heavy.”
“When you really stop to think that someone died to give me their heart, that gets hard,” Kornwolf said. “It brings me to tears that somebody had to be sacrificed to give me a better shot at life.”