Jim Kenyon: Canaan Man Breathing Easier After Double Lung Transplant
Nearly three months after undergoing a double lung transplant at Massachusetts General Hospital in Boston, Jake Lusona is on the road to recovery. The short walk from his bedroom to the kitchen at his parents’ home in Canaan no longer feels as though he’s climbing Mount Cardigan. He’s enjoying his favorite food — tacos — again. He’s ditched the walker, and is driving his pickup.
But Lusona knows the road ahead could get bumpy. Then again, what else is new? He’s used to dealing with life’s twists and turns.
Lusona, 28, was born with cystic fibrosis, a life-threatening genetic disease that primarily affects the lungs and digestive system. Since he was a kid, Lusona has been swallowing pills and taking puffs from inhalers to keep his CF, as it’s known, in check. “With CF, it’s a grind. You don’t get a day off,” said Dr. Worth Parker, a pulmonary specialist at Dartmouth-Hitchcock Medical Center involved with Lusona’s care. “Every day you have to do something to keep yourself stable.”
In spite of the precautions, Lusona’s lungs would still periodically fill with a sticky mucus that seemed as thick as wet concrete and made it almost impossible to breathe. A tube, inserted into his arm, pumped antibiotics into his body to kill the bacteria overwhelming his lungs. “He didn’t want his friends to know that he was in the hospital,” said his mother, Sandy. “He didn’t want to be known as a sick kid.”
After a week or so in the hospital, he’d be back with his friends, skiing and rock climbing. He played soccer and rode his dirt bike. “When we were growing up, Jake could do all the normal things that we could do,” said childhood friend Justin Barney. “As Jake got a little older, we started to notice that he’d get a little winded when we were skiing or something. He got sick more often, too, but he never made a big deal about it.”
Lusona didn’t dwell on his disease. He went to college. He earned his journeyman electrician’s license and landed a job with an electrical contractor. It was only in the last four years or so that the disease “caught up with me,” Lusona said. The damage to his lungs was beyond what daily medications and the occasional “clean out” could overcome. He had to stop working. He ate less and less while his weight dropped from 140 pounds to 90 pounds. Some days, he was so sapped of energy, he’d sleep 14 hours. “That’d be like a nap for me,” he joked.
An estimated 30,000 people in the U.S. have CF, according to the Cystic Fibrosis Foundation. The median predicted age of survival for people with CF is the early 40s.
While not a cure, a lung transplant can be a CF patient’s best — and last — hope. In April 2013, Lusona and his mother, a clinical secretary in DHMC’s cardiac department, visited Mass General. (DHMC doesn’t perform lung transplants.) Along with a battery of medical tests, Lusona met with a Mass General psychiatrist to determine if he was a suitable transplant candidate. Doctors want to make sure a patient has the mental “tool box” to handle the before and after of a transplant, said Parker, the DHMC pulmonary specialist who Lusona permitted to talk with me.
It wasn’t until about six months ago that Lusona’s condition began to deteriorate to the point that a transplant became his only chance. In April, after he’d been admitted to DHMC, a medical helicopter arrived from Boston to rush Lusona and his mother to Mass General. “He really was on death’s door,” said Parker.
After evaluating Lusona, Mass General’s transplant team broke the news to Lusona and his family that he wasn’t in good enough condition to be considered for a transplant. But after a couple of weeks at Mass General, Lusona’s condition stabilized. On April 28, he learned that a match had been found, and later that day, surgeons spent nine hours putting new lungs in his chest.
In mid-June, more than two months after he arrived, Lusona left Mass General with a shopping bag filled with anti-rejection and other medicines, which are kept on shelves in Sandy and Jack Lusona’s dining room. An app on Lusona’s smartphone reminds him what medications to take and when.
Since he’s disabled, Lusona is allowed to remain on his mother’s DHMC health insurance policy, and he’s also eligible for some Medicare benefits. Even so, the out-of-pocket costs for his medications run $450 a month.
Last year, friends, relatives and local businesses started holding bake and yard sales to offset some of the medical costs. Barney, his childhood friend, organized a benefit concert in Manchester that raised $10,000. “It’s been overwhelming, in a good way,” said Lusona. “I don’t even know who some of the (contributors) are. I wish I did, so I could write them a note.”
Last week, Lusona returned to Mass General for a checkup, which included lab tests and chest X-rays. Everything seemed to be in working order, said Lusona, who is now up to 120 pounds.
But he knows that his new lungs come with no guarantees. Only two out of five recipients are alive five years after their transplant, according to the National Institutes of Health. “Everything has always been day to day for me,” said Lusona. “Any day that I didn’t wake up in the hospital with an IV in my arm was a good day.”
He was joined in Boston last week by Shannon White, who recently passed her licensing test to become a registered nurse. They met several years ago at a mutual friend’s Christmas party. “I was completely enamored with her from the beginning,” said Lusona.
They’re starting to plan their wedding.
Jim Kenyon can be reached at email@example.com.