By the time he turned 28, cystic fibrosis had slowly destroyed Howell Graham’s lungs, stealing so much of his breath that he needed 15 minutes to cross a room. Brushing his teeth left him winded.
All his life, he’d endured its slow creep. But by 1990, the disease took such a grip on Graham’s life that he hardly left home, unable to work or socialize, treating himself with powerful antibiotics through an intravenous port attached to his arm.
Then doctors offered Graham a choice: undergo a 14-hour surgery to replace both lungs, the first procedure of its kind at UNC Hospitals and likely the Southeast. His surgeon, he recalled, gave him a 50-50 chance of survival.
“I was so miserable, I didn’t care,” Graham said. “The transplant would work, or I would be out of my misery. That’s the way I looked at it. I was done. I was done.”
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For the past 26 years, Graham has taken deep breaths through lungs donated by a stranger: a motorcyclist killed in Florida. This feat makes him the nation’s longest-surviving double lung transplant patient, and at 54, he enjoys life as a partner in his real estate appraisal firm, an avid boater and a self-described social butterfly.
In the decades since Graham walked out of UNC, more than 33,000 patients nationwide received new lungs, fourth among organs behind kidneys, livers and hearts. Replacing a pair of lungs has gotten quicker and less painful over the years, said Dr. Thomas Egan, the surgeon who did Graham’s transplant at UNC. Doctors no longer cut through the sternum to access the lungs, reaching them instead between the ribs on either side.
The chances of survival now stand much higher than the odds Graham faced. Roughly 85 percent of patients with his condition live for a year beyond the transplant; 60 percent survive five years and 15 percent see two more decades.
But what hasn’t changed, Egan said, is the dire need for organ donations. As of today, 1,386 people are waiting for lungs in the United States, federal statistics show. For 35 percent of those patients, the waiting time is more than a year. Many more patients who need a lung transplant won’t even appear on the waiting list, which costs a registration fee of roughly $1,000 to join, because their need is not yet desperate enough.
Graham, who is married and lives in Wilmington’s Landfall community, considers himself twice blessed. He sits on his porch wearing shorts in February, his yellow Labrador Bristol on a leash, chatting busily on his cellphone only feet from the Intracoastal Waterway. He may have lost his youthful head of hair, but time has been kind to him.
“I’ve written two or three letters to my donor family,” said Graham, who does not know their identity but could reach them anonymously, “and every time I get ready to send it, something else cool happens I want to tell them about. I think about how lucky I am. My birthday is in February. My transplant month is October, and that is almost more important to me. My second-chance birthday.”
More than 30,000 people worldwide live with cystic fibrosis, a progressive disorder that clogs the lungs with mucus. The average lifespan for patients worldwide is about 37, and while lung transplants can add years, they do not cure the disease because the defective gene remains in the body.
Graham’s diagnosis came at age 2.
For much of his childhood in Charleston, S.C., he kept his disease a secret from friends, playing little league baseball and roughhousing with other kids. Even in college at UNC-Wilmington, where Graham studied business, he hid his declining health.
“He was sick quite a bit,” said his younger sister Molly Allred, who lives in Raleigh. “It always seemed to be life-threatening. But he did keep it a secret. He wanted to have as normal a childhood as possible, and he thought letting his friends know would change that. He played tennis. He sailed. He did this. He did that. I kept the secret as well, and I remember at one point it became a burden. I remember some kids chasing me around the neighborhood because they heard a rumor about Howell.”
I didn’t know what to quote him on survival.
Dr. Thomas Egan, surgeon who performed Howell Graham’s double lung transplant
The older Graham grew, the more frequent his hospital treatments. He often spent two weeks in bed receiving antibiotics through an IV tube, and he recalled, “Some of them were so strong if you threw them at the wall it would take the paint off.”
Eventually, in his 20s, Graham persuaded doctors at UNC to let him take the drugs at home, leaving the IV port in his arm so he could medicate two to four times a day while working his real estate job. But six months before his transplant, he required oxygen 24 hours a day.
“That was going to be it,” Graham recalled. “This disease was probably going to snuff me out.”
Transplanting lungs had long puzzled the medical community. Keeping patients alive with these donated organs proved to be an unsolvable problem until very recent decades. The first successful single-lung transplant happened in Toronto in 1983, where Egan was present as a young doctor. Double-lung followed in 1988. When Egan presented this option to Graham two years later, the procedure was considered experimental.
“I didn’t know what to quote him on survival,” Egan said.
But when Graham woke up at UNC, a nurse he described as an uncommonly beautiful brunette held his hand for her entire shift. “I thought I was dead,” Graham said. “Thank God there’s beautiful women in heaven.”
And after a day and a half, Egan returned to pull out the ventilator. Graham took his first breath with his new lungs, a gift from the motorcyclist he never met. He inhaled deeply on his own without any trouble.
“This,” he thought, “is pretty cool.”
‘He’s a charmer’
Not even a year later, Graham was back in Wilmington, living the life he’d wanted. He took his boat out one day, dropped some friends on Masonboro Island and steered out into the ocean to watch a regatta off Wrightsville Beach.
It was hot that day, and he jumped off the back of his Boston whaler for a swim – impossible one year earlier. But while he rolled over the waves, his boat drifted further off behind him, and when he turned to look, the wind had caught its canvas top and carried it 100 yards away. Too far to swim without exhausting himself, he decided to tread water and wait for a rescue. He waited an hour and a half.
I’ve written two or three letters to my donor family, and every time I get ready to send it, something else cool happens I want to tell them about.
“I sat there thinking, ‘How could I go through that transplant and be so stupid?’ ” he said from his living room, a quarter-century later. “All I could think about is how furious Dr. Egan would be. I wasted a perfectly good lung.”
But while he cursed himself, a windsurfer sailed past and tossed him a line, bringing him to shore. He didn’t even care that his boat had floated all the way to Figure Eight Island, earning him a ticket.
He got married soon after.
“He’s a charmer,” said Debbie Graham, who was a dentist at the time and guessed at his medical condition. “I think if I’d been Joe Blow off the street, I wouldn’t have known anything. Sometimes, I still don’t think about the fact that he has cystic fibrosis or he’s walking around with a transplant. CF patients, they’re unstoppable.”
Even early on in their relationship, when they went to UNC for appointments, Graham’s wife noticed that people treated him like a walking miracle.
His success as a transplant patient can’t be easily explained. Luck is certainly involved. Persistence, too. In 2001, Graham’s appendix ruptured. In 2008, he beat colon cancer, diagnosed early enough to require only surgery. To this day, he has to take a lot of medication to stave off rejection.
It hurts Graham to know that somebody had to die for him to live. But he shows his gratitude daily just by living good and hard.
How to become an organ donor
In North Carolina, fill out the registry at donatelifenc.org. Also, potential donors may request that a heart be placed on the driver’s license while at any state DMV office.