BROOKLINE-"Every day's a blessing," says Michael Winot of Brookline, who has reason to mean it more than most.
Winot has been living with a donor heart longer than almost anyone else in the world.
This weekend, Winot will celebrate his 40th year of living with a heart transplant by holding a big party open to everyone who wants to celebrate with him and his wife, veterinarian Heidi Winot. Her clinic in Newfane is also celebrating an anniversary this year, its 20th. Both Winots are 58.
The fact that Michael Winot has just been returned to the heart-donor waiting list does not faze him one bit, nor will the Winots allow it to dim the celebration.
The longest surviving heart transplant recipient, for 41 years, is believed to be Susan Burkhart, 74, of Mount Vernon, Illinois, who has earned recognition of the milestone from Guinness World Records.
Michael Winot is a man of few words. He is a big man. He stands 6'3" and has an imposing physical presence - big hands, wide shoulders. He looks like the high school athlete he was before his heart began to give out.
That he has lived this long with a donor heart is exceptional. That he has lived a full and recognizably Vermont life makes his story even more extraordinary.
"He's stubborn," Heidi said. "We all say that's how come he's lasted this long. He doesn't read the statistics. He just puts his head down and keeps going."
Not taking it easy
As the Brattleboro Reformer covered Michael Winot's journey from 1983 to 1985, from diagnosis to inclusion on the donor list to the operation itself, the newspaper painted a picture of a former teen athlete who was weak, exhausted, and depleted.
Heart transplant patients are then also told to take it easy after the surgery, but Winot has reclaimed his active, outdoor life, which provides him with plenty of excitement.
He grew up on a farm. He has been part of the NewBrook Fire Department for 42 years and is the assistant fire chief. He has raced into burning buildings, rescued people from icy waters, inhaled smoke, responded to car accidents, and restored dying patients' heartbeats with CPR while holding on for dear life in a rushing ambulance.
He works for the Newfane road crew, maintaining roads, plowing, and grading. He hunts and fishes. He has done excavation work. He sugars.
"We were raised on a farm," Michael said. "So I did farming. Lots of hay, you know, throwing lots of hay. I've done carpentry, mowed lawns, done landscaping, worked for a tree company. I've done a little bit of everything. In other words, whatever comes along."
The Winots have broken a lot of barriers. They were told they could never have children, but they have two daughters and two grandchildren. They have lived a full and eventful life together.
"I think being physically active is part of the reason that he has lived for 40 years," Heidi said. "Because there were a lot of people in our group that were so cautious they didn't do anything. It really helps to be active rather than sit around and worry about everything."
She adds that, "in a lot of ways, he's still a guinea pig 40 years out," with his medical team "all kind of astonished that he's done so well for so long."
'We've survived past, like, four teams of staff'
Michael Winot's longevity is something of a miracle. To put it into perspective, he was one of the first people to receive a heart transplant from the Brigham and Women's Hospital Heart & Vascular Center in Boston.
It was in 1985, when heart transplants were new to New England. The hospital now touts him as their oldest living donor.
Winot's journey started in 1983, when as a teenager he was diagnosed with cardiomyopathy, a condition where one's heart has trouble pumping blood around the body.
"He was on all the sports teams," Heidi said. "His bus driver was a family friend and noticed that he was not feeling well after competitions. So his parents took him in for an exam."
Dr. Bob Backus, his doctor, determined that something was not right with Winot's heart. "They sent him to Dartmouth Hitchcock Medical Center [DHMC], and he was diagnosed with an enlarging heart in April of 1983," Heidi said.
By 1985, his condition had declined to the point where he was referred to a heart transplant team.
"There were still a lot of unknowns at the time, and they had talked about sending him to Pennsylvania," Heidi said. "That had the most well-known program at the time."
She said that because Winot's family included three siblings at home, "his parents said, 'We can't go that far away,'" Heidi Winot explained. "Brigham and Women's had just started their program, and he was allowed to be admitted to their transplant program, which was considered experimental at the time."
Winot knew he was in trouble.
"Back then, going through all the tests, you kind of know right away," he said. "I was getting a lot of headaches. I was tired. I had palpitations."
In a strange twist of fate, all of his siblings suffered the same condition.
"At the time that he was diagnosed, they thought it was viral," Heidi said. "But shortly after his transplant, his 16-year-old brother died very unexpectedly, and they found that he had had the same heart disease. So [his family] took the other two kids to Boston right away and found out all four kids have it, but they've never been able to find a genetic link.
"So we still don't know where it came from," she said. "There's no family history outside of him and the siblings."
The remaining two Winot siblings are patients at the cardiology department at DHMC, but Michael's sister is on the transplant list of Tufts University.
Winot's surgery and the long recuperation are a blur to him. He does not remember much about that time.
"They have to cool you way down to do the transplant," Heidi said. "And then it takes at least a week for them to kind of bring you back up to normal [temperature]. And he was dealing with kidney failure and all kinds of stuff. They had delayed the transplant until they didn't have a choice, and so he was really, really debilitated. And there was months of rehabilitation just to learn how to walk and do basic functions."
The Winots do not know who donated the heart.
"Back then, they would allow you to reach out to the donor family, but it was up to the donor family to make a connection," Heidi said. "And so his family had written letters, but the other family elected not to communicate. So they just knew it was an 18-year-old that was in a car accident in New York. And that's it."
Winot takes 16 medications every day to keep going. He has actually outlasted the cardiac team at Brigham and Women's who transplanted him. He goes back every three months to be monitored.
"We've survived past, like, four teams of staff," Heidi said. "It used to be like Old Home Day going down there. Now it's new people."
Last man standing
In May, Winot was put back on the waiting list.
"He's had 40 years of a heart that's been transplanted," Heidi said, adding that a heart that old "starts having physical changes that are not ideal."
Come what may, the Winots are grateful for their 40 years.
"We're really thankful, because back when they were doing that, they didn't really know what to tell [patients] to expect," Heidi said.
She said Michael is one of a group of five patients who all had transplants around the same time and became "really close friends because of that trauma bonding experience. They all had other medical issues."
Michael is "the last man standing from that group," Heidi said. "He was the first otherwise healthy individual that participated in their transplant program."
'It's been a good run'
The party is planned for the West River Stables, 102 Hill Road in Brookline, on Sept. 27. It starts at 3 p.m. and will go through the evening. There will be food, games, and music. Dinner starts at 5 p.m. Everyone is invited. The Winots will provide the main course, but side dishes are welcome.
"If you aren't able to attend but would like to send a card, send it to 174 Whitney Hill Rd., Brookline, VT 05345," Heidi said when she put the invitation on Facebook. "Please share the invitation with anyone you know who may want to come. Feel free to invite others and spread the word. We look forward to celebrating with you."
The party will go on as planned, but the Winots are facing some uncertainty about their future. The call could come at literally any time, and Michael Winot will have to go back to Boston for his second transplant.
"There's no way to predict when they'll find a match," Heidi said. "But we decided we're going to put a pin in the calendar and celebrate the anniversary. It'll either be a 40th or a first. Who knows? So far, it looks like it'll be the 40th."
They held a big celebration on the 30th anniversary of the transplant as well, but this will probably be the largest one they have organized.
"Our community did so much to help encourage and support us 40 years ago," Heidi said. "Courtney Nau took the lead in starting a family fund to help pay for his transplant. I have no idea how much it actually cost, because we weren't really allowed to be a component."
Nau created the Winot Family Medical Fund, which raised more than $40,000, according to news accounts at the time. That's roughly equivalent to $115,000 in today's dollars.
"Courtney didn't want there to be conflict of interest or anything. So he created a separate board of directors for this account, and they did fundraisers, and that helped pay for his transplant 40 years ago. So this is a celebration of community as well."
For the Winots, it has been 40 years of living in the present tense.
"You live it with it," Michael said. "But you don't think about it. It's just living."
"It's been a good run," Heidi said. "We appreciate our community. I think one of the blessings of living in small town environment is that everybody's part of the team."
This News item by Joyce Marcel was written for The Commons.