Stroeder's Fight To Live Enters Its Next Round

The 18-year-Old Will Travel To California For Tests To Determine Whether She Qualifies For A Liver-Lung Transplant

By Joe Rojas-Burke

of The Oregonian staff

A shy 18-year-old woman who wants desperately to live will step aboard a multimillionaire's private jet today, amid a well-wishing crowd of friends and neighbors at the McMinnville airport.

Her destination is Stanford University Medical Center in California.

There, Brandy Stroeder -- who has been fighting the state to get a potentially life-saving liver and lung transplant -- will face the latest of many hurdles still before her. She will have to demonstrate that she is a "suitable" candidate for organ transplantation.

In no other area of medicine does this responsibility fall so heavily on the patient. The explanation is straightforward and harsh. People with failing hearts, lungs and livers must compete for an extremely limited supply of donor organs.

Last year, more than 6,000 people died awaiting an organ transplant, and the number on the waiting lists climbed to more than 67,000 from less than 61,000 at the end of 1998.

The scarcity forces transplant programs to be highly selective of the patients they list on the national registry for allocating organs, factoring in medical criteria as well as the patient's commitment to stick with treatments -- not to mention his or her ability to pay.

"We cannot give up a precious organ to somebody who is going to destroy it," said Dr. William Berquist, medical director of the pediatric liver transplant program at Lucile Packard Children's Hospital at Stanford University.

Stroeder was born with cystic fibrosis, a genetic disorder that is destroying her lungs and her liver. Without a simultaneous lung-liver transplant, her doctors at Oregon Health Sciences University have said she is unlikely to live more than two years.

Her insurance, the government-funded Oregon Health Plan for poor or disabled residents, has refused to pay for the combined transplant. Officials have ruled that it has not been proved and is therefore excluded from coverage.

Shilo Inns owner Mark Hemstreet, a multimillionaire, has promised to raise whatever it takes to pay for Stroeder's transplant, which will probably cost more than $250,000. Stroeder's McMinnville neighbors and other Oregonians have donated more than $60,000.

Yet the young woman still worries about money. Her mother, Karen Stroeder, supports her daughter and son by working at a meat-packing job with no health benefits. She and her daughter have to convince Stanford's transplant program that they can cover costs beyond the operation itself.

"We do have the after-expenses to think about," Brandy Stroeder said. The drugs that transplant recipients must take for the rest of their lives to prevent organ rejection cost as much as $15,000 a year.

Health plans, whether private or government-funded, seldom pay for everything and often pay for only a fraction of the total cost, said Joyce Stumpf of the Children's Organ Transplant Association, a nonprofit group in Bloomington, Ind., that helps families raise money.

Because of the shortage of organs, the lack of financing looms large in transplant centers' decisions about who to put on the waiting list, Stumpf said.

"Even if you are a candidate, if you can't prove that you can take care of your new organ, they won't transplant you," Stumpf said. "They want to know you've got some backup, how you are going to pay for the (anti-rejection) drugs, before they even put you on the waiting list."

Stroeder also faces scrutiny of her personality type and her commitment to taking anti-rejection medication without fail.

Past behavior that may have led to organ failure should not be considered a sole basis for rejecting a transplant candidate, according to ethics guidelines of the United Network for Organ Sharing. But those same guidelines urge transplant centers to consider "very cautiously" any patients with a history of ignoring or neglecting important self-care routines, such as taking daily medications.

"Would this individual be compliant? Would they take their medication? Do they have the right support system at home? Do they have the right expectations? There are lots of issues that we have to tackle," said Berquist, the Stanford liver transplant specialist.

None of this worries Brandy Stroeder.

"It's a big, big surgery. For a lot of people I'm sure that's intimidating," she said. "I look at it as, 'That's your second chance.' It's not a cure. You are exchanging one kind of medication for another. But you are extending your life expectancy."

Stroeder began thinking about transplantation more than two years ago, when two of her closest friends with cystic fibrosis were dying. One of her friends died at age 17, having decided that transplantation wasn't an option. Another was 14 when the disease took a drastic turn and doctors decided transplantation wouldn't be appropriate.

"I started asking, 'Why did they suddenly take a turn for the worse? What can I do to prevent that?' " Stroeder said. She made up her mind that she wanted to live as long as possible.

At Stanford, Stroeder will undergo tests of her lung and liver function and other medical evaluations. To qualify medically for transplantation, the condition of her organs must be severe enough to justify the drastic step of transplantation. But she can't be so ill that her chances of surviving seem too low to the surgeons.

"These patients have to survive a very taxing surgical procedure," said Dr. John Rabkin, director of liver and pancreas transplantation at OHSU in Portland. "They have to be able to tolerate very powerful medications.

"They have to be convinced that all of the hardships that they go through will be counterbalanced by a quality of life that will make it worth it to them."

Somewhat sardonically, Stroeder said: "They are not going to transplant you if they think it will make their survival statistics look bad."

Berquist said bad timing can pose a dilemma.

"Are we going to get her started on the list soon enough? Are we too late? Are there some things that would come up in the evaluation that would preclude her as a candidate at this stage?"

In cases of children or young people, Berquist said, transplant centers have come to expect harsh criticism when they elect not to accept a patient, no matter the reasoning.

"When you are in competition for a limited supply of organs, it does put pressure on the patient. It puts a lot of pressure on those of us who are providers of health care as well," he said.

"Oftentimes with children, we have to face the wrath of everyone."

As hard as it is to turn patients away, Rabkin said it's far tougher for him to tell patients who are strong candidates that a lack of donor organs could mean they will die.

"Everyday I see people and I tell them there is at least a 30 percent chance that they are never going to get a chance because there aren't enough organ donors," he said.

You can reach Joe Rojas-Burke at 503-412-7073 or by e-mail at joe rojas@news.oregonian.com.

Copyright © 2000 Oregon Live.

This article posted July 22, 2000.