Defying the odds

CLAYTON — The Cystic Fibrosis Foundation notes that about 90 percent of people with the disease are alive one year after a lung transplant and 50 percent are alive after five years.

Watertown native John Stephen O'Neill realizes he's beating the odds, 14 years after his double lung transplant.

Mr. O'Neill, whose parents were told not to expect him to live much past kindergarten, has watched friends and fellow CF sufferers succumb to the disease.

"You almost feel like you're someone preparing on D-Day," Mr. O'Neill said. "You look back on all the people who died. But you didn't do anything different and survived. You were just lucky."

In 2006, Mr. O'Neill had another minefield to step through when he was diagnosed with cancer.

That was three years after he underwent a kidney transplant.

Mr. O'Neill, 55, a 1972 graduate of Watertown High School, lives in Dayton, Ohio, where he has become involved in CF awareness and raising money for the Cystic Fibrosis Foundation. This year, he took part in two walkathons for the organization, raising about $5,800. CFF is the leader in raising money for research to find a cure.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the U.S. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Mr. O'Neill was in Clayton the last week of October to visit his parents. He's the oldest of four sons of former Watertown residents John F. O'Neill and Constance Exley O'Neill, younger sister of the late author Frederick E. Exley.

After graduating from SUNY Oswego, Mr. O'Neill took a job in Dayton as a computer systems analyst at NCR Corp. He married there and became the father of two daughters.

He was forced to take a medical retirement in 1993 when his lung function hit the low-20s percentage.

In 1995, Mr. O'Neill was given a deceased donor's healthy set of lungs in a nine-hour operation at Barnes Hospital/Washington University School of Medicine in St. Louis, Mo. However, the operation left him blind. Physicians speculated it may have been caused when his blood pressure dropped very low during surgery. He eventually shrugged off the blindness as "stuff happens."

According to the CFF, nearly 1,600 people with CF have received lung transplants since 1991.

The disease doesn't go away after a lung transplant. The recipient still has CF in the sinuses, pancreas, intestines, sweat glands and reproductive tract, the CFF notes.

Mr. O'Neill said the immunosuppressive drugs he takes because of the transplant led to kidney problems and the kidney transplant.

But he had found the perfect match for the kidney donation: his second wife, Carol, whom he married in 1999. His wife is the head nurse at Dayton's Stillwater Center, a facility that treats children and adults with severe and profound mental retardation.

Mr. O'Neill has a daughter in college and one, age 17, at home. His wife also has two teenage daughters at home. It's one life situation where he often finds humor.

"It's probably best I can't say, 'You're going out wearing that?!'" Mr. O'Neill said.

He also thinks the anti-rejection drugs led to non-Hodgkins lymphoma and colon cancer, with which he was diagnosed three years ago.

"Cancer is a lot more common in someone who is immunosuppressed," he said.

Doctors treated his colon cancer by removing part of his colon.

"The diagnosis is good," he said.

Mr. O'Neill is among a growing number of adults with CF. In October, during the 23rd annual North American CF Conference in Minneapolis, health care professionals discussed the growing population of adults with the disease

In 2008, the median predicted age of survival for CF sufferers rose to 37.4 years, up from 32 in 2000.

More than 46 percent of people with CF are age 18 or older. The CFF said the increasing number of adults living with the disease brings new challenges. For example, adults may be faced with diabetes associated with CF, osteoporosis, reproductive issues and depression.

In 2008, the CFF launched the Program for Adult Care Excellence, which aims to recruit and train additional CF adult care providers.

Whatever the next challenge, Mr. O'Neill will be ready for it. Along the way, he'll continue to impress others, including his mother, who visited her son in Dayton last spring when he took part in one of his walkathons.

"I think seeing him there at that walkathon with those other patients was inspiring," Mrs. O'Neill said. "One of the patients just wanted to hold his hand and walk. That was a nice experience for me. It was the first time I saw him interact with others involved with cystic fibrosis."

Mrs. O'Neill said she often has to pinch herself as she sees her son walking, or doing anything else, as she is tremendously thankful for organ donors.

"It's just amazing when you think about it," she said. "I have this child with someone else's lungs."