April 27, 2012 at 9:23 AM ET
Even to the casual observer, Victoria Chakwin, with hair the color of a tropical sunset, lip piercings and a “not traditional” black and red dress, probably will stand out Saturday at the Hedgesville (W.Va.) High School senior prom.
But what truly makes the 18-year-old remarkable can be seen only on a CT scan. Transplant surgeon Bartley Griffith describes them as her “lovely lungs,” a gift from an unknown donor that made it possible for Chakwin to join her classmates at prom and make plans for the next stage in her life.
Only three months ago, Chakwin was near death. For a third of her life, she’d been battling pulmonary fibrosis, a disease marked by scarring in the lungs that literally took her breath away. Doctors don’t know what caused Victoria’s illness.
“I started getting sick the summer of 2005. I was going into sixth grade,” Chakwin tells TODAY in a phone interview from her Martinsburg, W.Va., home. “My breathing was just getting worse and worse. Mom thought I was being lazy.”
A doctor diagnosed her with asthma and prescribed an inhaler, but that didn’t seem to help. When difficulty breathing landed her in the emergency room, Chakwin recalls, “they said it’s all in your head.”
A week later, she was back in the hospital and remained there for three weeks. A lung biopsy revealed pulmonary fibrosis, rare in someone her age. Many people live only three to five years after they’re diagnosed, according to the American Lung Association.
“It’s all been kind of a rollercoaster since then,” Chakwin says. A rollercoaster with far more downs than ups.
Eighth grade was the last time Chakwin was able to spend the entire year at school. She managed to finish the first semester at school in ninth grade and eleventh grade, but didn’t even make it that far in tenth grade. Her classmates were making her sick. When they got the sniffles, Chakwin, with her shrinking lungs, would be hit much harder.
Chakwin has spent her entire senior year with a homebound teacher. She was on oxygen and, because of her declining lung function, needed a wheelchair when she left the house. Going to senior prom “was something that was always in the back of my mind,” she says, but she feared she would be too sick -- or worse.
She spent weeks in the hospital, first at Children’s National Medical Center in Washington, D.C., and then at Johns Hopkins in Baltimore, where she hoped to get a lung transplant. But three days after she was put on the waiting list for donor lungs, Chakwin says, she spiked a fever, and doctors deemed her too sick for transplant surgery.
Her family wouldn’t give up, though. “I fought as much as I could for her,” says mom Robyn Schonhans, a New York City police officer for 10 years until knee surgeries forced her to retire. “She has to be a fighter. She has me for a mother.”
Hopkins doctors contacted other transplant centers to see if they would take on Chakwin. Two would: Duke, in Durham, N.C., and the University of Maryland Medical Center in Baltimore. Duke was too far to transport Chakwin, so she was transferred to the University of Maryland hospital Jan. 13.
There, she was immediately put on ECMO, an external lung machine that oxygenates the blood and then pumps it back to the body. “She clearly would have died if we hadn’t that,” says Griffith, director of heart and lung transplantation.
Griffith, who worked with transplant pioneer Dr. Thomas Starzl at the University of Pittsburgh before moving to Maryland a decade ago, doesn’t easily give up on patients. “I want to save everybody,” he says. “I hate to walk away from patients I know are going to be high risk and their only chance is a transplant.”
In Chakwin’s favor, Griffith says, only her lungs were beyond repair. “This young lady showed no signs of irreversible organ damage other than the lungs.”
Although some colleagues probably still felt that transplanting Chakwin would be a waste of scarce donor lungs, Griffith says, “there were enough people who felt she was worth a try.” Chakwin was put back on the waiting list within 24 hours of her arrival at his medical center.
Just 17 days later, a donor became available just as Griffith was supposed to fly to Fort Lauderdale for a meeting of thoracic transplant surgeons. “There was no way I was not going to participate in this transplant.” Because Chakwin’s own lungs had shrunk so much, it took 10 days for her chest to expand to accommodate her new lungs and enable her doctors to completely close her wound.
The average one-year survival rate after a lung transplant is 75 percent to 85 percent, Griffith says, but, given that Chakwin’s body has not yet tried to reject her new lungs, “the prospects for her are better than that.”
Chakwin was released from the intensive care unit in early March and spent five days in a “step-down” unit before undergoing rehab for three weeks. She went home April 6, just in time for Easter.
She’s going to the prom with one of her best friends, Caylee Davis, who took a week off from school so she could be with Chakwin in the hospital around the time of her transplant. Schonhans, who’s divorced from Chakwin’s father, is going to throw a barbecue before the girls leave for the dance.
Chakwin, who’s managed to maintain a 3.8 GPA, plans to finish up her requirements for graduation this summer. She’ll take a year off—“just sitting around, goofing with my friends”--before studying psychology in college. “Now I have the whole world ahead of me.”