The good news is, Nick Monaco’s insurance is covering 80% of his impending double-lung transplant.
The bad news is, 20% of the procedure’s $1 million cost is still $200,000.
As Monaco waits for the operation he hopes will give him his life back, his family is working to pay for it. They’ve signed up with the National Foundation for Transplants, are conducting raffles and are putting on a pasta dinner from 11 a.m. to about 3 p.m. March 7 at the Moose Club.
The family has to raise money not just for the medical bills, but for the month they expect they will need to spend in the Boston area while he recovers.
“I’m pretty proud, but I’m not afraid to beg for him,” said Nick Monaco’s wife, Julie. “He’s a good man.”
Nick Monaco, 57, suffers from chronic obstructive pulmonary disease. More commonly known as COPD, it’s a breathing disorder that can have a variety of causes. In Monaco’s case, he was born with a gene — likely inherited from his father — that interferes with the production of an enzyme necessary for lung strength.
Monaco said he spent his childhood thinking he was perfectly healthy and didn’t learn of his condition until he started having trouble breathing in his late 20s.
“Dr. David Austin was the one who discovered it,” Monaco said. “He told me I had the lungs of an 80-year-old man who smoked all his life. ... The disease progresses. You can’t stop it. You can slow it down.”
Monaco quit smoking. He said smoking wasn’t responsible for his condition, but it certainly didn’t help. He became a regular at Vermont Sport and Fitness in 2001.
“My doctors told me had I not done an exercise routine, I’d probably be in worse condition, or I wouldn’t be here,” he said. “Some people (with COPD) can’t walk across the room. I was fortunate enough that I was fit enough to exercise, and I could keep up my strength.”
But, while he was able to slow the progression of the disease, he couldn’t stop it. His breathing problems accelerated, and in 2016, he was told he likely had less than a year to live. But he also was told he was a good candidate for a double-lung transplant.
“I didn’t know they even did that,” he said.
Monaco was referred to Massachusetts General Hospital, in Boston, where he was told he wasn’t a transplant candidate just yet. Transplant patients need to be in a narrow window between too sick and too healthy, and he was still on the too-healthy side.
He returns for additional checks every six months and was told in September that he was finally in the window. That leaves him one more appointment and a battery of tests away from what he hopes will be a green light.
“There’s a lot of stuff involved when you go in for a transplant,” he said. “Everything from your teeth to your toenails. They want everything to be good. They don’t want any surprises when they open you up.”
Once he’s cleared, then he has to wait for a suitable donor.
“They have to be a certain size,” he said. “They’ve measured where my lungs are. They have to be a perfect fit and same blood type.”
Monaco said it’s not lost on him that he’ll be waiting for someone else to die.
“I feel sad,” he said. “They say not to. ... it’s a gift. ... I want to pay this forward. With anyone going into this or who has COPD, I want to set this up so they can call me with any questions they have.”
When the call comes, they’ll have three hours to get to Boston — a time limit that doesn’t leave them much wiggle room driving from Rutland. The operation typically takes 10 hours, and could go as long as 14. After that he’ll be on a number of anti-rejection drugs, and will face an uncertain recovery period and the risk of a number of complications about which he said he is trying not to think.
“It’s a lot to wrap your head around,” he said. “I’m focused on getting through this.”
Once it’s all over, Monaco said, there are a number of things he’s hoping to be able to do again.
“Just to be able to walk around the block without oxygen,” he said. “To go hunting and fishing. I want to be able to go to Disney again with my family and dance with Julie. I can’t dance with her because I get too winded. I want to go somewhere with my grandkids and play with them.”
Monaco’s page on the National Foundation for Transplants website is at give.transplants.org/goto/nickmonaco