Cystic Fibrosis Ends Man’s Wait For New Lungs

One of the bravest young men I’ve ever met took his last shallow breath about half an hour before midnight Dec. 30.

Ryan Edison, 27, spent his entire life battling cystic fibrosis, a congenital killer that turns breathing into a Herculean, 24-hour-a-day labor.

The north Spokane resident died a week after a compassionate Seattle-area doctor for the state Department of Social and Health Services stuck his neck out and approved payment for a controversial second lung transplant.

That glimmer of hope considerably brightened Ryan’s last days at Deaconess Medical Center.

But nothing could stop the downhill physical spiral that began a year ago, when Ryan’s body started rejecting the new lungs given him at the University of Washington in July 1995.

As the end neared, Ryan was “telling us it didn’t look good, that he didn’t think he was going to make it,” says Ryan’s uncle, James Smith. “He said, ‘I feel like I’ve been in a really long race.”’ Nobody ran a race with more conviction or courage.

With all his soul, Ryan waged war against the illness that shadowed him and killed his twin sister, Ronda, 10 years ago.

On Saturday afternoon, a crowd of Ryan’s loved ones packed a North Side funeral home to say goodbye to their complex friend whose life was as short as his breath.

There were recollections of Ryan’s guitar playing and brief career with an alternative rock ‘n’ roll band. A few impressive selections of his short fiction and poetry were read.

Ryan wanted to one day teach college philosophy. Two days before the end he asked his sweetheart to marry him.

This kid definitely didn’t want to die.

Ryan’s story is a classic example of the frustrating inconsistencies that exist in the nation’s spotty transplant system.

Because each transplant center sets its own rules, there is no overall policy on who qualifies and who doesn’t.

Operations are enormously expensive. Organs are precious few. That dilemma often forces insurance companies and doctors into making cold decisions.

Because of these factors, Ryan wasted a lot of his energy in a cruel, emotional scramble for a second transplant.

The University of Washington refused to give Ryan another transplant because of his chronic infection that significantly lowered the odds of success.

Last November, the Edison family traveled to California where UCLA surgeons agreed to give Ryan another transplant. The hitch was getting someone to pick up the tab for another $150,000-plus operation.

Qual-Med, the insurance company that underwrote Ryan’s first operation, flatly refused to pay for another. A doctor who assesses Qual-Med cases said the firm had no further obligation as it had already doubled Ryan’s lifetime transplant coverage.

Fast running out of options, the Edisons turned to Washington’s Department of Social and Health Services and finally found a friend in Dr. Eric Houghton.

“If we can afford to build B-2 bombers, we can afford to give this kid a new set of lungs,” says Houghton, who examined Ryan’s case and gave the go-ahead for payment.

“Health care about has to be a right. You can’t have a bunch of haves and have-nots.” A second transplant is “expensive but it’s money well spent.”

It was great news. Unfortunately, Ryan had run out of waiting room.

His last request is a simple one:

This country is in desperate need of organ donors. All it takes is answering “yes” to a simple question the next time you get your driver’s license renewed.

Please do it to honor the memory of a brave young man.

, DataTimes ILLUSTRATION: Color photo

MEMO: Donations to help other cystic fibrosis sufferers and their families can be sent to “The Ryan Edison Memorial Fund” in care of U S Bank, 508 W. Third, Spokane, 99204.