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A SCARCE GIFT OF LIFE DEMAND FOR ORGANS EXCEEDS SUPPLY

Like most people who need organ transplants, Laura Ryan waited for a stranger to die so she could live.

She had emphysema from an inherited disorder. Her body didn't make enough of a protein thought to help protect the lungs.

The Cheektowaga resident couldn't walk without losing her breath. It was only a matter of time before her lungs would grow so inefficient that she couldn't breathe.

Two years ago, Mrs. Ryan was placed on a list for a lung transplant. She, her husband and two daughters were still waiting with a mixture of fear and hope this April when medical personnel telephoned to tell her to prepare for a second chance at life.

It never happened. Mrs. Ryan died a week after the call, symbolizing a frustrating truth about transplants: Demand for organs far exceeds supply.

"It's not until you're in the middle of this that you realize the amazing difference between the number of people donating organs and the number of people who need them," said Dennis, her husband.

Last year, 3,926 patients died waiting for transplants of all types. Mrs. Ryan was 40 when her time ran out.

More people could benefit from donated organs because of improved transplant technology, but donations have not kept pace.

The number of people waiting for transplants has grown from 16,000 in 1988 to nearly 54,000 today, including 159 people in the Buffalo area.

There are more donors -- about 8,900 in 1996, compared with 5,908 in 1988 -- but nearly all of the change came from new techniques that allow for the use of much older patients.

The number of younger donors has decreased, experts say, because of safer automobiles and fewer life-threatening accidents.

The United Network for Organ Sharing determines how organs are allocated, ranking patients according to such factors as severity of illness, tissue match, blood type, length of time on the list and health status.

The system has rules, but it is imperfect.

Questions about fairness hit a high point in 1995, when Mickey Mantle received a liver after a short wait.

People wondered if the 63-year-old former New York Yankee slugger and self-professed alcoholic received the liver two days after going on a national waiting list because of his celebrity. Most others wait months.

His wait turned out to be no different from other critically ill patients. But the issues in the case still generate debate.

In a new organ network policy, people suffering from long-term liver failure of the sort seen in alcoholics and drug addicts would no longer get priority. Instead, patients with the best chance of surviving the operation, rather than those who are sickest, would be first in line for a liver.

Transplant policies also vary by region of the country.

Most states have carved themselves into areas and demand that organs go first to compatible recipients waiting in the same area as the donor, even if a patient elsewhere has a more urgent need.

Fear and hope

The wait for a transplant stimulates every emotion.

In darker moments, Lauri Butzer has felt self-pitying fear. The 28-year-old North Tonawanda resident also has been filled with joy at the prospect of new lungs and a renewed life.

"There are mornings when I wake up and ask, 'Why me? Why not the guy who smoked a pack a day?' I'm too young to die," she said. "You can't let that attitude get to you. I tell myself that my life can only get better with a transplant."

She has suffered respiratory problems most of her life that continue to worsen. Her lungs are so poor that she must remain tethered to an oxygen pump 24 hours a day. Otherwise, she could barely walk from one room to another.

Miss Butzer is on a list to get a transplant at Buffalo General Hospital but said she may wait as many as five years for the operation because she is healthier than other candidates. She'll know she's closer when she gets the beeper patients receive so they can react quickly when their time for a transplant comes.

With new lungs, Miss Butzer could take a leisurely walk around the block with her fiance, Brian, or go to the supermarket without having to haul a tank of oxygen.

She also could have children.

"We thought of putting off the wedding, but others told us to go ahead with plans," she said. "Still, I have this vision of me walking down the aisle of the church and having the beeper go off."

A balancing act

The selection of candidates for a transplant is a balancing act between patients who deserve and would benefit from it the most.

"The young guy who needs a new liver because he ate a bad mushroom while camping should go to the top of the list ahead of an older guy on his deathbed who has been waiting for the same organ," said Morgan. "The sickest people do the poorest."

Physicians play a key role in the decision.

They don't want to put patients on a waiting list until they've exhausted other treatments. But they don't want to wait until a patient is too sick to survive transplant surgery.

Jean Maikranz hopes she gets a new lung before she's too ill. She already has waited nearly a year.

The Niagara Falls resident is 65 and suffers from severe emphysema, a condition she developed after smoking three packs of cigarettes a day for 50 years.

"When emphysema is bad, it kills you in three to five years. I need a new lung or I will die," she said.

Like Miss Butzer, Mrs. Maikranz, who quit smoking almost four years ago, lives connected to a tank of oxygen.

She continues to run a tailoring business out of the basement of her home. She undergoes regular therapy to increase the strength of the muscles in her upper body.

And she goes over plans with her husband, Joseph, for the day the hospital in Pittsburgh, where she will have the operation, activates the beeper she wears.

The typical preservation time for a lung is four to six hours. So, the Maikranzes keep tabs on private airplane pilots willing to fly them to Pittsburgh when the call comes that an organ is available.

What if there's a snowstorm that day?

"Then we're in God's hands," Mrs. Maikranz said.

Hard to find donors

The upstate transplant agency, which covers Western New York and northern Pennsylvania, last year recovered 89 major organs from 35 donors.

That is is nearly double the number of donors in 1994 and places the agency among the top 10 nationally on the basis of donations per population.

Still, it's a small number. Most usable organs are buried.

Transplant agencies depend on hospital nurses and doctors to call them when they have a patient who may make a good donor. It's a system that requires close personal relationships.

"We're asking people to call us at the low point of their day, a point that might represent failure to them," said Myron Bennett, the agency's director of recovery operations.

For Bennett and his colleagues, success requires a lot of legwork. They have to visit hospitals dozens of times, make themselves known to the staffs and hope that those relationships lead to a referral.

Once they obtain a referral, their work has only begun. Then they must delicately persuade grief-stricken families to part with a loved one's organs.

It's a process that can elicit squeamish reactions and breed distrust, especially if a patient is brain-dead. Family members often don't understand that the condition, unlike a coma, means the patient is clinically and legally dead.

"People think you're placing a priority on harvesting organs rather than saving the patient," Bennett said.

Those who have been through the organ donation experience know the difference.

Dennis Ryan didn't hesitate to donate his wife's usable organs when she died. Doctors took her corneas, kneecaps, heart valves and Achilles' tendons, an indication of the remarkable number of items that can be transplanted.

Ready to move

Organs have to fit properly, and tiny ones for children are difficult to find.

That's why surgeons plan to cut up an adult liver and place a section of it in 11-month-old Emily Case of Falconer.

The little girl was born with biliary atresia, a rare condition that results in the obstruction of the ducts that carry bile from the liver to the intestine.

Her family has its luggage packed for the drive to the Pittsburgh hospital where the transplant is to occur. They must be there within four hours.

Recovery from a transplant takes months, and they will have to live near the hospital until Emily is well enough to return home.

"When Emily made it to the transplant list, the first question the doctor asked us is if we were ready to move," said Rosa, her mother.

Twice the Cases have received calls from the hospital, telling them a liver had been found, only to get another call an hour later, telling them the liver was not compatible.

In the meantime, they continue to wait, worrying that Emily's condition will deteriorate.

It's a test of nerves.

"You get frantic," Rosa Case said. "But my mother's instinct tells me she is not going to die."

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