It’s a calm day at East Fork Pro Marina in Hamlin. The bird calls are met by the sudden roar of an engine.
Marina owner Thomas Barbera has begun working on one of his client’s fishing boats — a strenuous task that he wasn’t able to do years ago.
“I lost virtually five years of my life where I had to have somebody care for me,” said Barbera, 56.
During those years, he was basically living in a hospital waiting for an organ.
“That was brutal,” he said.
In 2013, Barbera was diagnosed with stage four heart disease. He tried everything, including a pacemaker and an artificial heart. He remembers when doctors placed the artificial heart in his hand and told him this would be his “bridge to a transplant” if he chose that treatment.
“They said, ‘If not, we’ll make you comfortable and you won’t last a couple of days,’” Barbera recalled.
Doctors told him that a transplant was the best means of survival.
According to the Finger Lakes Donor Recovery Network, roughly 104,000 people nationally are on the waitlist for an organ; about 85% are waiting for a kidney. Seventeen people die each day waiting for a transplant.
Finding a donor was a torturous waiting game for Barbera and his family, one filled with mixed emotions.
“You feel guilty sitting there waiting for someone to die,” he said.
In 2017, the donor registry found Barbera a viable match. Cameron Michael Thomas, a 22-year-old registered donor from Ohio, saved several lives after his death with his organ donations. Including a strong heart that was given to Barbera.
“We all cried when we got the news,” he said.
The transplant was done in October of that year, and six months later, Barbera was back at the marina tending to his clients.
“It's ‘game on’ now. I can do everything,” Barbera said. “My daughter has trouble keeping up with me now.”
Organ donation and transplants are currently on the rise in the U.S. Nancy Ryan, director of development for the Finger Lakes Donor Recovery Network, said donor registration has tripled within the past 10 years. She said nearly 40,000 deceased donations were made in the U.S. last year, setting a national record.
“I think it’s because more people are becoming aware of organ and tissue donation, and what it means to be a donor,” Ryan said. “We're finally able to start breaking down some of those myths and barriers and misunderstandings.”
She said among those myths is the belief that someone might be too old to donate or not healthy enough to be a good candidate, which she said is incorrect. Ryan said the most important thing is documenting your status.
“What people need to understand is, if you don't make this decision on your own behalf now, your family may have to make that decision for you,” she said. “We know that is the hardest thing for families to have to decide upon.”
Ryan wants to encourage the community to learn more about the donation process and to sign up.
“Transplantation is a miracle,” Ryan said, “but we can't have it unless there's that donor hero.”
Barbera said before his quest for a heart transplant, he was not an organ donor. He said it was just something he didn’t pay much attention to until it hit home. Now, his message to his friends and the public is simple.
“If it's a viable organ, leave it for somebody else to use it,” he said.
