Many With Cystic Fibrosis Living Longer

Longer Living, Better Living?

There is still no actual cure for CF. And with more lifelong treatments available that are now given more frequently, many may wonder whether living longer means living a better quality of life.

Przybyl said he takes 15 different medications a day, along with several kinds of breathing treatments.

"The treatment burden is still really high, and patients and families struggle with it," said Dr. Bruce Marshall, vice president of clinical affairs at the Cystic Fibrosis Foundation. "But it's a tradeoff for better lung function, better nutrition, and a healthier life."

In fact, many CF patients remain on the wait list for lung transplants. From July 2008 to June 2009, 16 percent of those on the waiting list died before finding a match, according to the Scientific Registry of Transplant Recipents. And even with a successful transplant, many patients can only expect to live about five more years.

"Transplant is not an easy out. It's not a perfect solution," said Marshall. "You trade one set of problems with another set of problems."

For Cystic Fibrosis Patients, a Mid-Life Crisis at Age 30

Although Przybyl's lung function is just 35 percent, he said he is not yet eligible for a transplant.

Still, according to Dr. Scott Palmer, scientific director of the transplant center at Duke University Medical Center, the knowledge that they may be able to live longer has improved many patients' outlook on life.

"Many of the years of their life are good quality," said Palmer. "I'd like to think that we're giving them more years, and more quality of years."

While Pryzbyl still feels the limits of the disease on his body, he said he now thinks about the future, something he did not often do in his teens.

"Every morning I wake up and think, 'Here's another day,'" said Przybyl. "Hitting 30 was like, talk about having a midlife crisis, Holy Moly!"

Przybyl said his goal is to help raise his 11-month-old son and stick around long enough to fish together with him and his own father.

"I don't feel like I'm accomplished yet," said Przybyl. "There's more I need to be doing, that I feel I've been sent here to do."

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