The disease is growing in prevalence, he said, perhaps because people are living longer or because they are exposed to more contaminants. It's still uncommon in children.
Patients are all treated the same way, with corticosteroids and immunosuppressants. Those who qualify go on the transplant list.
"But there are far more people who need a lung transplants than there are lungs," Edelman said. "Centers are very picky."
Edelman said he has a patient who was a good candidate for a transplant but was rejected because he had no family nearby to support him.
The survival rate five years after a lung transplant is 70 percent, and after 10 years it's more than half. There are no separate statistics for children because so few have had lung transplants.
Tori, he said, "will be someone to watch."
Griffith, Tori's transplant surgeon, will be watching with hundreds of others who helped care for the teen.
University of Maryland Medical Center performed 375 lung transplants in 2011, more than any other hospital in the state, according to data from the federal Organ Procurement and Transplant Network. Just four were performed on children.
"There is a small but needy group of young people," Griffith said. "We have to make the decision if they are too sick to benefit from a transplant, and few centers will take someone once he's been on ECMO because the outcomes are well known to be not as good."
Tori, he said, is cured of pulmonary fibrosis, though she now will face regular monitoring and a lifetime of anti-rejection drugs.
"The proof is in the pudding," he said. "She has a prom dress, and she looks marvelous."
Tori said she's ready with her dress and red Chuck Taylor sneakers. Her mother is throwing a barbecue before the dance for some friends and family. Her escorts will be her two best girlfriends, Caylee and Breanne.
She hasn't been to her high school in more than a year and is a little overwhelmed at the thought of seeing her hundreds of classmates. She hopes they won't make a fuss over her.
"I'm going to stay as long as I can handle," she said.
Tori kept up with her studies and will graduate with her class, though she plans to go camping instead of attending the ceremony. She's become a bit shy from years of feeling a little different.
She hid her illness, and long ago gave up on dances, sports and cheerleading, which took too much of her breath away.
She plans to take a year off and travel before going to college for a degree in psychology. She hopes to personally thank the family from Tampa, Fla., who donated her new lungs.
"I finally have the ability to make plans for the future," she said. "Amazing."