Student with CF grabs life by the tail > For active college freshman, limitations of cystic fibrosis one more challenge

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BANGOR — From Massachusetts and New York, from West Virginia and Alabama, and from a few miles up the road in Orono, college students come home for the holidays, and parents sigh with relief.

Their relief at the student’s safe arrival is even more understandable if she has cystic fibrosis, a genetic disorder with severe respiratory and digestive complica- tions.

Eighteen-year-old Carrie Ives, the daughter of Nancy and Bruce Ives of Cherryfield, has cystic fibrosis and is a freshman at the University of Rochester in New York — a 13-hour drive from home, and nearly as long a trip from her doctors in Bangor.

Of their recent first visit to Rochester, Nancy Ives said, “We went with the idea that this was too far away.” She said it made all kinds of sense for Carrie to attend college in Maine “where her support system would be close by.” But Rochester has a good cystic fibrosis clinic. And Carrie Ives has never been short on spunk.

Ives graduated last June second in her class at Dexter Regional High School, where she was president of the French Club, a member of the National Honor Society and earned several scholarships and awards.

She also was busy with activities that come more easily to people with strong lungs and the ability to move lots of air: dancing, teaching Sunday school, playing trombone, even taking on lead singing roles in productions of “Annie” and “Guys and Dolls.”

For Ives, the respiratory complications of CF are not as severe as in others with the disorder. She believes dancing helps clear out the thick mucus that builds up in the lungs of people with CF.

For many years, the youngster had to undergo twice daily percussion, a 10- to 20-minute procedure in which a parent would tap her back to help clear her lungs. She does that for herself now by donning a therapy vest which pulsates the air in her chest.

Ives’ cystic fibrosis was diagnosed when she was 22 months old, so she has grown up living with the disease and accepting it.

“The first thing I remember about it was wondering why I was taking all these pills and other people weren’t,” Ives recalled. “It wasn’t whether it was fair or not.”

Gymnastics classes, piano lessons and even a year of basketball were parts of Ives’ childhood.

“It’s just the kind of kid she was,” said Mrs. Ives. “She’s always been a go-getter — `I’ll grab life by its tail’ — and she continues to be that way.”

Some credit for that attitude has to go to Ives’ older brother, Seann, who always treated her like a regular kid sister despite her CF.

“He annoys me,” Ives said with obvious affection. “He keeps me in competition with him.”

Keeping up her many interests, especially the physically challenging ones such as singing in musicals, “wasn’t an easy thing, but I enjoyed it, so it was worth it,” Ives said.

The main thing, she said, “was I couldn’t get sick. The schedule for practices a lot of the time was very exhausting. That made it a lot easier for me to get sick.”

Ives said her friends accept her situation, and teachers over the years have tried to explain CF to her fellow students. When the family lived in Millinocket, a middle school teacher taught a health unit on cystic fibrosis, with Ives and her father demonstrating percussion for the youngsters.

Ives has been hospitalized a few times, but far fewer than some children with CF. A couple of her hospital stays were to remove her tonsils and adenoids, treatment to try to minimize the sinus infections she has experienced. She also has CF-related diabetes and takes insulin twice a day.

Ives is well aware that her disorder, which affects the lungs and pancreas, frequently limits the life span of those affected to less than 30 years. Already she has lost friends much younger than that to CF.

As for her own mortality, “I don’t think about it,” Ives said. But ask her what she would tell children coming to grips with CF, and her view of life and her condition becomes crystal clear.

“I’d tell them that they can deal with it,” she said determinedly. “You have to be strong, and you have to look beyond the inconvenience … day by day. You never know when they are going to come out with a cure for it.

“They’re talking about genetic therapy, and there are more and better treatments than there used to be,” she said. “I’m sure that will continue.”

Research is going on at many facilities, including the Jackson Laboratory in Bar Harbor. Ives has taken part in fund-raising walks for research through the Cystic Fibrosis Foundation.

With her positive attitude, Ives is a good candidate for the helping professions. She hopes to become a psychologist after college.

Ives will attend a reception in her honor from 1:30 to 3:30 p.m. this afternoon in Mason Auditorium at Eastern Maine Medical Center in Bangor, where she is treated at its cystic fibrosis clinic. The event is sponsored by the hospital and by Solvay Pharmaceuticals, a Georgia company which awards $2,500 scholarships to people with CF. This year, Carrie Ives is the only scholarship recipient from New England.

Ives is enjoying her Christmas break, making time for shopping and visiting with friends. Soon she’ll give Mom and Dad a hug and join the rest of Maine’s flock of college students as they disperse to learning institutions both near and far.

“I’m a normal kid,” Carrie Ives says.

But others, including a Bangor hospital and a Georgia pharmaceutical company, recognize her as someone special.