Teen Wrestles With Enormity Of Possible Double Transplant

Brandy Stroeder Won't Know For A Month Or More Whether Doctors At Stanford Will Put Her On A Waiting List For Recipients

By Joe Rojas-Burke

of The Oregonian staff

PALO ALTO CA -- It may take a month or more for medical experts to decide whether they'll accept 18-year-old Brandy Stroeder as a candidate for an exceptionally difficult and rarely performed lung and liver transplant operation.

But the McMinnville teen-ager, who has cystic fibrosis, had to face a more immediate question about her feelings and motivations during two days of preliminary testing last week at Stanford University Medical Center.

After eight months of fighting for insurance coverage for the operation, suddenly the decision about whether to move forward with the duo transplant -- an operation done only 10 times in the United States -- seemed to hinge on her, and her alone.

"This is a life and death situation," Stroeder said, "and you've got to be really focused, focused about taking your medications, focused about eating right, focused about exercising."

Stroeder was born with cystic fibrosis, and the disease is slowly destroying her liver and drowning her lungs in an excess of secretions. Doctors in Portland suspect she might not reach her 20th birthday without a combined organ transplant.

Her insurance, the government-financed Oregon Health Plan, has refused to cover what it considers an experimental operation, estimated to cost at least $250,000. But state health officials recently confirmed that even if the transplant isn't covered, the plan would pay for follow-up care and anti-rejection medications for as long as Stroeder is eligible.

Multimillionaire Mark Hemstreet, owner of Shilo Inns, has promised to help raise whatever it takes to cover the transplant costs, and he provided his corporate jet to take Stroeder to the Bay Area and back. McMinnville residents and others have raised more than $100,000 to cover her medical expenses.

The transplant team at Stanford's Lucile Packard Children's Hospital is reviewing Stroeder's medical history, family situation, mental preparedness and finances. Stanford is one of the best transplant centers in the West, but it has never attempted a combined lung-liver transplant.

One Stanford doctor, a lung expert who would take care of Stroeder after the transplant, didn't mince words. He told Stroeder she wouldn't survive the operation if she wavered in her commitment to prepare physically and mentally for the ordeal -- and scrupulously follow a complicated self-care regimen afterward.

"This is how it's going to be," he told her. "If you don't see it my way, we're not going to do this."

Stroeder said she was shocked at his frankness.

"But I was kind of honored the way he said it, because he must have thought I could handle it," Stroeder explained Thursday, her second day of testing. "If not, then maybe I would realize I'm not as tough as I thought."

The experts at Stanford offered little feedback on her chances of making the donor waiting list. "We are certainly impressed with your bravery," Dr. William Berquist, head of pediatric liver transplantation, said at their last meeting Thursday. "We're going to be very pleased if we can help you," he added, with some emphasis on the "if."

Extreme shortages of organ donors forces all transplant programs to be highly selective of candidates. Last year, more than 6,000 people died waiting for a donor organ, and the number on the waiting lists swelled to more than 67,000 from less than 61,000 at the end of 1998. What's more, if Stroeder does qualify, she still faces a possible wait of two years or more to rise to the top of the waiting list.

Stanford rejected Dennis Weber, a 30-year-old with cystic fibrosis who lives near Los Angeles. Weber is hoping for a lung and liver transplant to prolong his life. After Stanford turned him down, he approached other centers. Cedars Sinai Medical Center in Los Angeles accepted him nearly three years ago, and he is now at the top of the waiting list.

"A good pair of lungs is very hard to come by," he said. "For me, there is no other way around it. My lungs are getting worse. If I don't do something about it, I'm not going to be here too much longer."

The hurdles don't end with the operation. The risk of dying during or soon after surgery might be 30 percent or greater, by some estimates. Patients can expect to remain in critical condition for a week. Life afterward is forever changed by a reliance on a multitude of antirejection drugs. After lung transplantation alone, survival after five years drops to about 50 percent.

To make these realities vivid, Stanford doctors showed Stroeder a video that followed a child through the process. The scenes in the intensive care unit hit hard. A horrifying mass of tubes sprouted from the child's chest, arms and nostrils.

"It looked bad. That was a real check," Stroeder said. The images conjured vivid memories of her own pain of recovering from abdominal surgery three years ago. A fearful part of her rose up in rebellion. She said she could almost hear a voice asking her: "Do you really want to go through that?"

And the answer came to her. It was an unqualified "yes."

You can reach Joe Rojas-Burke at 503-412-7073 or at joerojas@news.oregonian.com.

Copyright © 2000 Oregon Live.

This article posted August 3, 2000.