By Vicky Eckenrode StarNewsOnline.com
Howell Graham didn’t intend to be a landmark medical case. He just wanted to walk five feet without having to take a break.
On Friday, it will be 20 years since Graham became the first cystic fibrosis patient to undergo a double-lung transplant at UNC Hospitals when the procedure was just starting to be attempted around the country.
Now 48, he is thought to be the longest-surviving patient of the procedure.
“It’s a big day, Friday,” Graham said earlier this week from the living room of his home in Wilmington. “I’m glad to be here.”
Twenty years ago, doctors couldn’t give him that guarantee when he was a 28 year old facing an operation in its risky early days.
Graham adjusted early on to having cystic fibrosis, a chronic disease that causes the body to produce extra mucus that causes problems with the lungs and pancreas. Mucus build-up in the lungs creates issues not only with lung function but also lung infections.
The disease affects about 30,000 people in the United States, according to the Cystic Fibrosis Foundation.
For Graham, who was diagnosed at 2, it meant medicine and breathing treatments for years.
“Growing up, I guess I didn’t notice much. I really didn’t know there was much difference,” he said. “With cystic fibrosis, the lungs end up eventually destroying themselves. The sickness frequency became more and more the older I got.”
Through college at University of North Carolina Wilmington where Graham went to business school, his parents encouraged him to remain positive. His dad would tell him that one day doctors would figure out how to get him a new set of lungs, which in the early 1980s was unheard of, and Graham brushed it off as his parents trying to keep his spirits up.
He knew the reality that he had a progressive disease with no long-term solution available at the time. But he was still fairly active, riding his bike and water skiing, and for the most part life was normal.
So when doctors at UNC Hospitals told him in the spring of 1990 about a transplant operation that would allow him to finally have a set of healthy lungs, Graham passed.
The procedure was new and not enough operations had been done for his doctors to say how successful it would be. They warned him there would be a 50-50 chance of surviving.
The risk seemed too high for Graham.
But as the year went by, things quickly got worse.
“It was hard to just go up four or five stairs. They put me on full-time oxygen. I was getting short of breath brushing my teeth,” he said. “At that point, I had no life whatsoever.”
Graham was ready to accept the risk of the surgery.
On Oct. 8, 1990, surgeons spent 13 hours on the transplant operation, and soon after Graham began his recovery.
“It felt like taking a normal breath,” he said. “I don’t think I’d ever taken a normal breath until my transplant.”
About 1,600 people with cystic fibrosis in the country have received lung transplants since 1991, according to the Cystic Fibrosis Patient Registry.
In the 20 years since Graham’s surgery, a lot has changed, said Benjamin Haithcock, surgical director of UNC’s lung transplant program.
“The mortality associated with it was pretty high,” he said about the early days of the procedure. “It used to take a good half a day to full day to do this operation. Now, it’s down to five or six hours.”
He said developments in immunosuppressive drugs have decreased chances of transplant patients’ bodies rejecting the lungs.
Howell’s wife, Debbie, said doctors told him at the time he would be trading one set of problems – his breathing difficulties – for another set of issues – being on anti-rejection medicine.
His more vulnerable immune system made it particular dangerous when years after the transplant he overcame a ruptured appendix and then colon cancer.
“Howell has this drive in him that makes him unstoppable,” said Debbie, who met Howell the year after his transplant. “From my perspective, he seemed to take the news of complications from his ruptured appendix and diagnosis of colon cancer as if he had a cold. I guess this comes from his living with a chronic disease and pushing onward day to day.”
Early next year, the Grahams plan to hold a “birthday party” to mark the 20 years that have passed since his surgery.
They want it to raise awareness of the importance of organ donation as well as a new method UNC surgeon Thomas Egan – who did Graham’s surgery in 1990 – is pursuing to increase the number of lungs available for transplants by restoring the organs’ viability even if it’s been hours after a donor’s death.
“I want people to know that organ donation, it works,” Graham said.
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