Ryan Edison was as giddy as a prisoner suddenly pardoned from a lifetime in a cage.
For the first time in the young Spokane man’s long battle with cystic fibrosis, he felt the intoxicating joy of being normal.
He sucked sweet, clean air while running two miles at a stretch. He found a girl who wanted to share his future. He enrolled in college and dreamed of someday teaching philosophy.
And then, just as suddenly, Ryan’s nibble of freedom began slipping away with each breath.
Last winter, following a bout with pneumonia, his body started rejecting the new lungs given him in a July 1995 transplant at the University of Washington’s medical center.
“Sometimes I wish I’d never known what it was like to breathe easy,” says Ryan, an articulate 27-year-old with light brown hair and sad, expressive eyes. “Mostly, though, I’m so thankful for the time I had.”
Ryan’s last hope lies in a second lung transplant. Without the operation, he will surely die and not in the too-distant future.
In the meantime, he plays an agonizing waiting game with his parents inside their North Side home.
He swallows between 70 to 80 pills a day. Pink, yellow, blue … each one must be taken at a precise time and dose.
With his lungs working at only 20 percent capacity, Ryan is constantly tethered to a long, clear plastic tube that snakes from an oxygen tank to a clip under his nose.
“No matter how deep a breath you take, it’s never enough,” he says.
The problem is that most transplant centers reject second lung transplants out of hand.
That’s because the survival rate of patients for one year drops from about 80 percent after the first operation to 40 percent after the second. Donated lungs, some doctors argue, are too few and too precious to throw away on such long odds.
Other centers balk at transplanting cystic fibrosis patients like Brian. Compounding his CF, he suffers from a chronic bacterial infection that is extremely resistant to even the most high-powered antibiotics.
Then there’s the sheer economic weight of it all. Even the most progressive insurance company won’t bite the bullet on a second $100,000-plus lung transplant.
Yet, to a person facing certain death, even a hair-thin chance is better than despair.
The failure of Ryan’s transplant is horrible, says his doctor Michael McCarthy. “It’s almost like getting a miracle and then the miracle gets suddenly taken away.”
On Wednesday, Ryan and his family travel to California’s UCLA Medical Center, where they will plead their case to specialists running the transplant program.
The Edisons are cheered to get a face-to-face meeting. It will be much harder, they reason, for the surgeons to turn away someone they’ve met.
“It’s difficult to ask the people I love to go through all this one more time,” he says. “But you’d be surprised at what you’ll do when you want to live.”
Even if he is accepted, there’s a chance Ryan could die waiting for new organs. He knows this, but who can blame him for continuing to fight?
This family has been through so much pain.
Ronda Edison, Ryan’s twin sister, died of cystic fibrosis at age 15. The genetic disease the twins were diagnosed with as infants withers the lungs and plays havoc with the digestive tract.
She was a feisty, quick-witted girl, recalls Ryan. The illness always seemed to hit her harder.
Ronda died never having the option of a lung transplant, which is a relatively new technology. Ryan felt guilty about that and spent a considerable amount of time weighing what he should do.
“I finally decided that she would want me to stay alive,” he says, “and do whatever I can do to beat this thing.”
, DataTimes ILLUSTRATION: Color photo