By sharing his incredible story of receiving a life-saving heart transplant, Marbleheader Gary Swain hopes to help others and spare families pain.
“Sign up to donate your organs,” Swain said in an interview with the Marblehead Current coinciding with National Donate Life Month, which is observed in April. “Be a hero. Save somebody’s life.”
Swain, who is 66, had suffered from irregular heart rhythms since he was a teenager. After an array of tests over the next few decades, his arrhythmia worsened, and he was eventually evaluated for a cardiac transplantation.
An avid outdoorsman and sailor, he continued to hike and sail.
“I remember thinking, ‘If I drop dead out racing, what better way to go?’” he said.
In September 2019, he was sick enough to be listed for a heart transplant.
“It was hard — I’ll admit, it was very hard,” Swain said. “A lot of people looked at me and had no idea what was going on.”
Doctors ultimately diagnosed Swain with a genetic defect, passed down from his father, that had damaged his heart.
Swain had to ensure several ablations, when doctors shocked his heart back into normal rhythm. While he was waiting for an ablation at Brigham and Women’s Hospital one day, he went into tachycardia — his heart was beating too fast, uncontrollably.
“I’m talking to the doctor, and my eyes rolled back into my head,” he said. “They brought in the crash carts. They eventually got me out of it. I remember asking, ‘Can I please have a new heart now?’”
Those incidents moved Swain up to the top of the transplant list. Doctors wouldn’t let him go home until he received his new heart. He got the word on Saturday, Aug. 7, 2021.
“They came in and said, ‘Gary, we have a heart for you,’” he recalled. “I can’t even tell you the emotions on that. First, pure terror. Everything had been surreal and now reality hit. And then a sense of relief. And then, it hits that somebody is dying, and I’m getting their heart. Somebody is losing somebody.”
That somebody was Michele Decoteau of Mason, New Hampshire, whose 39-year-old son, Daniel, suffered a traumatic brain injury. An Iraq War veteran and father, he was riding his motorized skateboard when he hit a newly graded part of a road and fell, hitting his head.
“People just loved him,” Swain later learned. “He supposedly had a heart of gold. And now I have his heart.”
Daniel Decoteau never signed up to be an organ donor, but his mother felt certain he would want to help others, even in death. So, after agonizing for hours with family members, she decided to donate her son’s heart, liver, kidneys, corneas and tissues.
Swain received Decoteau’s heart on Aug. 8.
“From the donor family side, we’re so happy we saved lives, but we’re still having a hard time,” said Michele Decoteau.
Swain reached out to Michele in a letter and enclosed a glass-blown heart. He did not know at the time that the Decoteau family had enjoyed glass blowing as a hobby.
Swain and his wife, Sheelah, met Michele and her husband at a New Hampshire park on Mother’s Day 2022. Michele brought a stethoscope and listened to her son’s heart beating inside Swain’s chest.
“The day was very meaningful — especially because it was on Mother’s Day,” she said.
Choking back tears, Swain added, “It was healing for them. Their son is living on through me.”
Both Decouteau and Swain now speak out in support of organ donation. Decoteau led a Donate Life event at the New Hampshire State House this month. They will both speak at Brigham and Women’s Hospital next month.
They share the same message: Sign up to be an organ donor, and encourage your loved ones to do the same.
“The impact Daniel has had on so many people is incredible,” Swain said.
To learn more about organ donation, visit DonateLife.net. Swain recommended the nonprofit HeartBrothers Foundation (HeartBrothers.org) as a resource for heart failure and transplant patients, and Decouteau encouraged parents who have lost children to visit CompassionateFriends.org.
Organ transplants by the numbers
— 104,234 men, women and children are on the national transplant waiting list.
— 42,000 organ transplants were performed in 2022.
— 17 people die each day waiting for an organ transplant.
— Every donor can save eight lives and enhance 75 more.
Leigh Blander is an experienced TV, radio and print journalist who has written hundreds of stories for local newspapers, including the Marblehead Reporter. She also works as a PR specialist.