Beryl Ohlson says her battle to get a lung transplant to save her son, Erich, is like being on fire."I'm not going to sit back and watch him die," she said this week in her 15 Atwater Circle home.
"I feel like I'm on fire. I'm doing all I can to get the lung transplant."
Complicating matters is the steroid, prednisone, and Ohlson's inability to persuade the Kaiser Permanente company to pay for surgery she says could be done at the University of Mississippi Medical Center.
Meanwhile, Erich Barrette sits across from his mother, a friendly guy in his living room, and says he does not think about what will happen if he cannot get a new right lung.
He spoke as tubes supplied him with the oxygen he needs 24 hours a day.
The 20-year-old had a bone marrow transplant in 1987 to stem a leukemia-like disease and refers to his present fight as a "setback."
"I've been through a lot already. And this is just one of the milestones I have to go through. The bone marrow transplant was one thing," he said.
Ohlson said her son must take prednisone to help his lungs function. The combination of radiation treatment before the bone marrow transplant surgery and a recent case of interstatial pneumonia have nearly destroyed both lungs, she said, but doctors have told her he could live with just one lung.
The prednisone that is helping keep Barrette alive is also causing the current problem. A difference of opinion exists on its use. Kaiser physicians believe Barrette must be weaned off prednisone and then be off it completely for a month before a lung transplant can be done.
Time is looming over the family. Ohlson said she does not know how long Barrette can live without a new lung.
Ohlson said doctors have told her since Barrette is on 8 milligrams of prednisone, he must drop one milligram a week, a two-month process, then wait another month.
But Ohlson said she has found a physician, Dr. Seshadri Raju at the University of Mississippi Medical Center in Jacksonville, who is able to perform lung transplants on patients not completely weaned off prednisone.
Ohlson and Barrette want to take that chance. Ohlson has contacted state legislators, newspapers, television stations and a series of doctors in pleas for help.
"His life is not going to go down the drain because Kaiser says no," she said. "I'd like to think that Erich's life is more important than the politics that they're playing."
Stacy Lundin, group medical director for the Massachusetts Permanente Medical Group, said Kaiser normally refuses to discuss a patient with the press. But Kaiser agreed to discuss Barrette because of the publicity on the case, he said.
"I don't think that this is a matter of politics at all. The physicians in our group who are caring for Erich have a responsibility to do what they feel are in his best interests," Lundin said.
Lundin said Kaiser officials have been trying to contact Raju. He said Kaiser will have a decision about funding the lung transplant in 10 days to two weeks.
Still, he said, it would be difficult for Kaiser to pay for the $175,000 surgery if Ohlson takes Barrette to Mississippi without Kaiser authorization.
"There are no bad people in this story, you know. I really believe that she's trying to be a good mother and we're trying to be good doctors," he said.
Ohlson said there's no question that she will take Barrette to Mississippi if delays persist, regardless of Kaiser policy.
Ohlson, who got a bleeding ulcer last year worrying about Barrette, now tries relieving stress by biking 18 miles to work every other day, and jogging. It's also clear that she gets strength from the positive outlook of her son.
"He has held up better than I. He always says, we all have to go through things in life. This is just what I have to do," she said.
Barrette sits hunched on a chair, his hands together, and smiles. An athlete as a youth, he was a top basketball and went 9 for 11 in his last Babe Ruth League at-bats, including three doubles.
But now, he watches a lot of television, and has knitted five sweaters.
In five years, he said, he'll be getting his bachelor's degree somewhere.
"The way I look at it, I'll probably end up helping other people."
@IN NEED _ Erich Barrette sits with his mom, Beryl Ohlson, at their home on Atwater Circle in Amherst. Barrette needs a lung transplant because his own lungs have been nearly destroyed by radiation treatments and a recent case of pneumonia. Doctors said he could survive on one lung.
PHOTO BY: DON TREEGER(SEE END OF TEXT)