Young Man Keeps Up Fight For New Lungs

It’s tough deciding which horror Ryan Edison faces is more diabolical:

Being slowly suffocated by his ravaged lungs or being slowly strangled by red tape. Either fate spells certain death for this articulate 27-year-old Spokane man who has spent a lifetime battling cystic fibrosis.

Ryan’s last chance lies in a rare second lung transplant, which the UCLA Medical Center is willing to perform. Ryan passed an evaluation there a few days after his story appeared in my Nov. 10 column.

But that good news is being overshadowed by some aggravating Catch-22 complications.

Before UCLA places him on the active waiting list for donor lungs, the cost of the $150,000-plus procedure must be guaranteed.

CHAMPUS the federal agency that oversees health insurance for military dependents - won’t pay because UCLA is not certified for transplants by Medicaid, Medicare or Social Security.

That leaves Qual-Med, the health maintenance organization that covered Ryan’s July 1995 transplant at the University of Washington Medical Center.

Ryan’s benefits, however, give him $150,000 in lifetime transplant coverage. As of Wednesday, says Dr. Donald Storey, Qual-Med has paid out $297,000.

“Clearly we’ve done our part … We have no more obligation,” says Storey, adding that he has nothing but sympathy for the Edisons’ gut-wrenching situation. “I don’t know how to make this a good story. If I were Ryan’s father, I’d be sick to my stomach.”

For the record, Ryan’s dad, Chris, is plenty queasy about his son’s dilemma.

And angry, as well.

“I hate to have the life of my son in somebody’s bureaucratic hands,” he says. “By God, if we still have a chance, then it’s worth fighting for.”

Those grave odds are probably the significant underlying factor for Qual-Med’s cold feet.

Ryan suffers from bronchiolitis obliterans, a chronic bacterial infection that is highly resistant to the most powerful antibiotics.

Most failed lung transplants do so because of this condition and few hospitals will consider retransplanting an obliterans sufferer.

There are doctors who have perused Ryan’s file and have concluded coldly that a second transplant would not merely be a waste of dollars, but a socially irresponsible waste of precious organs. They are shocked, not to mention furious, that UCLA would agree to perform the surgery at all.

But what parent wouldn’t leap at the slightest flicker of hope rather than see their child die?

The heartbreak is doubly deep for Chris and his wife, Vicki. The Edisons have already watched a daughter - Ryan’s twin sister, Ronda - die an agonizing death to cystic fibrosis 12 years ago.

The congenital disease was discovered when the Edison kids were infants.

There is still no cure for cystic fibrosis, which progressively withers the lungs and plays havoc with the pancreas. Lung transplants, still relatively new, offer many CF patients their first taste of a normal life.

Not long after the operation, Ryan found he could run two miles and gulp all the sweet air in the world. Then last winter, like some cruel joke, his new lungs began to fail.

Ryan is now in a room on the eighth floor of Deaconess Medical Center, trying to beat his latest bout with pneumonia. This courageous guy could use some Christmas cards and good wishes.

His energy level was so low that the simple act of eating a decent meal became an exhausting task. Ryan agreed to have a feeding tube surgically placed into his stomach while he recovers his strength.

“When you lose weight you can’t whip infections. You lose muscle mass. Everything gets harder,” says Ryan, pausing between each sentence to take a shallow breath. “It’s a losing battle, but we’re still fighting.”

, DataTimes