Victoria Chakwin

Victoria Chakwin, from West Virginia, received a lung transplant at the University of Maryland Medical Center and will be attending her prom this weekend. (Lloyd Fox, Baltimore Sun / April 26, 2012)

For the first time in the six years since Victoria Chakwin was diagnosed with a deadly lung disease, the gown she wears won't be hospital issue.

The 18-year-old from Martinsburg, W.Va., will go to her senior prom Saturday night in a red-and-black number she found on the Internet.

A rite of passage for most teens, the event is more momentous for Victoria — who's known as Tori — because people diagnosed with pulmonary fibrosis generally live only three to five years.

That she is headed to her prom demonstrates not only the possibilities of modern medicine but the will of the teen and her mother, according to Tori's doctors at the University of Maryland Medical Center, who in late January replaced her scarred, dysfunctional lungs with a donor set.

"We can do a lot with technology, if we're not afraid to use it," said Dr. Aldo T. Iacono, medical director of Maryland's lung transplant program, one of the few in the country that will transplant scarce organs into someone so sick.

He approved the Jan. 30 surgery after another area transplant center took her off the waiting list because, he said: "We sensed an extreme willingness to live and a lot of family support."

After a checkup on Thursday, less than three weeks after she was released from a rehabilitation hospital, Iacono declared Tori a normal teen — lip ring, blue nail polish, red hair and all.

Why Tori developed pulmonary fibrosis is a mystery. The disease affects up to 200,000 Americans and kills about 40,000 a year, but most patients are decades older than Tori, according to the Pulmonary Fibrosis Foundation.

Diagnosing the disease can be difficult, and indeed Tori was told she was asthmatic, allergic or seeking attention before doctors at a Washington hospital realized she was seriously ill.

Government research shows about 10 percent of sufferers have a genetic predisposition to the disease, and other cases have been linked to such disorders as lupus and rheumatoid arthritis or to environmental contaminants such as asbestos or coal dust.

Doctors believe the scarring, or fibrosis, is an inflammatory response to microscopic injury. The lungs become so damaged they can't properly pass oxygen into the bloodstream. Corticosteroids are used to try to stem the inflammation and scarring, but not everyone responds to the treatment.

Transplants are considered the only long-term means of survival, but many patients don't qualify because they have other health conditions or are too old. Some die while waiting on the donor list, doctors say.

Tori was put on a transplant list at another hospital on Jan. 5 but was removed a day later when she suffered respiratory failure. But her mother, Robyn Schonhans, a retired New York City police officer, would not accept that they were going to give her 10 days "to go to sleep."

"I said, 'The hell you will!'" said Schonhans, pushing doctors, who found her a place at Maryland, where she was transferred in mid-January.

She went into respiratory failure several more times, her ventilator no longer able to push enough oxygen into her lungs. Doctors hooked her blood vessels directly to a machine — known as ECMO, for extracorporeal membrane oxygenation — that removes carbon dioxide and infuses oxygen, the tasks normally performed by the lungs.

Tori was unconscious and clinging to life two weeks later when an anonymous donor was found and she was taken into surgery by Dr. Bartley P. Griffith, a chief of University of Maryland Medical Center's division of cardiac surgery and director of heart and lung transplantation.

The surgery was complicated because Tori's immobilized body had deteriorated, she was on blood thinners and the donor lungs were too big. Griffith said he had to remove the old lungs, reduced to the size of teacups, and sew in as much new lung tissue as he could. Her wound was left open and she returned to the operating room three or four more times to complete a little more of the operation as her chest expanded.

By March 1, her 18th birthday, her surgeries were behind her and she was sitting up and enjoying some frosting from her red velvet cake. Physical and occupational therapy helped her advance from a wheelchair to a walker and now to a cane.

"I was really pushing it," she said.