Ed Shaefer’s smile is probably the first thing you notice about him — people tell him they can see it even under the surgical mask he needs to wear during flu season. The Riverhead native has a lot to smile about. And that smile rarely leaves his face as he relates the story he calls his “wonderful journey.”
You see, Schaefer is living with a heart that belonged to someone else before him.
On Oct. 10, 2015, Shaefer and his wife Debbie, who live in Aquebogue, set off on a vacation. Little did they know it would be the start of a much different odyssey. They stopped in Queens at their son’s house, planning to head upstate later on. Shaefer recalls it was a beautiful autumn day as he and Debbie took a long walk to and from a neighborhood park. His right hand rubs a spot just below his ribcage as he recollects feeling gas pains that wouldn’t go away during the walk. Later that afternoon the family enjoyed time in the sunshine in the backyard and cooked dinner together. After supper, Schaefer dozed off, waking about 9 p.m. sweating heavily. Worried about the possibility he might be having a heart attack, they headed to nearby Flushing Hospital.
Doctors at Flushing Hospital rushed him by ambulance to North Shore University Hospital where, three days later, he underwent a quadruple bypass. Two hours after the bypass, Schaefer went into cardiac arrest.
Doctors told him his heart could no longer do its job. He needed a heart transplant.
At the time, North Shore did not do heart transplants. His doctors recommended Mt. Sinai Hospital in the city or Westchester Medical Center. The Schaefers chose Westchester, and there he spent the next two months following another surgery to implant a left ventricular assist device.
The left ventricle — the lower left quadrant of the heart — is the heart’s workhorse. After oxygenated blood comes into the heart from the lungs, it is pumped into the left ventricle. From there, in a mighty squeeze, it is expelled from the heart and sent into the body’s circulatory system. The LVAD is powered by an exterior battery pack.
He was put on the transplant list and began the long road in preparation to get a new heart. Doctors told him he had to gain enough weight to reach 130 pounds to be strong enough for the transplant surgery. He had to undergo psychiatric evaluations in addition to many physical check-ups. The Schaefers made arrangements with Suffolk County Police to be flown to Westchester in its medical helicopter if the time came that there was a suitable donor.
On the evening of Sept. 20, 2016 the phone rang.
“We have a heart for you,” said the voice on the other end of the line.
“Circling over Westchester Medical Center was a surreal experience. I had driven to it so many times. Coming in from the air was amazing,” said Schaefer.
He remembers the SCPD paramedic calling her family and telling her children that she was on an emergency flight and she’d be staying to see how it turned out.
“I thought that was so special,” he said. To this day, he keeps in touch with her.
On Sept. 21 at 3 a.m. doctors removed the LVAD and gave him his new heart.
“It started pumping right away,” the surgeon later told him.
He spent a week in ICU and two more after that in a medical unit.
“The doctors wouldn’t let me leave the hospital until I could manage my pill container by myself. — I never had to take pills in my life,” Schaefer said.
Now, to counteract his body’s impulse to reject the new heart, he had plenty of pills.
Three months after the transplant, Schaefer overcame his nervousness and wrote a letter thanking his donor’s family for giving him a new lease on life. Correspondence between organ donors and recipients is never done directly. The letters go through a third party in both directions. Letters are vetted to make sure there is no personal information in them that can identify either the donor or the recipients to each other. The social worker at the hospital cautioned him about expecting a letter back, explaining that not every donor family wants to connect with recipients of their loved one’s organs.
In March of 2017, he received a five-page letter in return.
“After reading half of the first page, I started bawling like a baby. My wife had to read the rest of the letter aloud to me,” he said.
He learned he had the heart of a 32-year-old man whose mother had to make the difficult decision to take her son off life-support measures.
She said she wanted to meet him.
They made a plan to meet at Westchester’s “Celebration of Hearts” two months later, on May 13. That day, the social worker told them the donor’s family hadn’t arrived yet — they were “running late because they were coming from a long distance.” Shortly thereafter, his donor’s mother, her husband, her 16-year-old son and two of the donor’s friends walked in.
“She asked me if she could listen to her son’s heart,” Schaefer recalled solemnly.
The two families bonded with that simple act.
It turned out that the donor’s family didn’t live so “far away” after all. They live in Oakdale and now the two families spend many occasions together.
Schaefer, 66, has become a staunch advocate of organ transplants. He speaks to doctors and nurses at medical seminars. He visits Westchester Medical Center at least once a month to talk with heart transplant patients both pre- and post-surgery to share his knowledge and experience. He volunteers with LiveOnNY and speaks whenever and wherever he can to encourage people to check the organ donor box on their NYS drivers’ licenses and enroll in the donor registry online. He will be especially busy spreading the word next month — April is National Donate Life Month.
Schaefer also urges recipients to write to their donor families to thank them.
Of the four people whose lives were saved with transplanted organs from his donor, he’s the only one who wrote to thank the family. Most recipients tell him that they don’t know what to say to their donor’s family.
“I just tell them, ‘How about thank you?’” he says, smiling.
The survival of local journalism depends on your support.
We are a small family-owned operation. You rely on us to stay informed, and we depend on you to make our work possible. Just a few dollars can help us continue to bring this important service to our community.
Support RiverheadLOCAL today.
