SCARBOROUGH — As fashion statements go, Ashley Drew’s vibrating vest was not the envy of her peers.
As survival gear, it is no longer needed, either.
“I don’t have to wear it, don’t have to do my breathing treatments and we don’t have a million things keeping me breathing,” Drew, 25, said as she recovers from a June 8 double lung transplant in Boston.
The Scarborough native, daughter of Tom and Joy Drew, came home last weekend, a month after she got the call from doctors at Brigham & Women’s Hospital saying a set of lungs was ready for her.
Drew was born with cystic fibrosis, a genetically transmitted disease that fills the lung with mucus and prevents proper breathing. For the 540 days before her surgery, she had been on and off recipient lists at Brigham & Women’s and The Cleveland Clinic in Ohio, waiting for a lung donor.
According to the Cystic Fibrosis Foundation, the estimated 30,000 people with the disease have a median life expectancy of 37 years. More than 45 percent of the cystic fibrosis patient population is at least 18 years old.
The last several years were especially difficult for Drew, a 2004 Scarborough High School graduate, who played volleyball, ran track, and plays piccolo, flute and saxophone. While attending the University of Maine in Orono, she played in the jazz band.
As she grew up, her home life consisted of breathing therapies lasting past midnight, including a vibrating vest used to clear her lungs when inhalers were not enough.
Rarely did she let on about her condition through school and college, until her health deteriorated as she started graduate studies several years ago.
After that, she became as familiar with hospital rooms as she was with her home. Friends held benefit concerts and fundraisers, and she tried to maintain the requisite 90 pounds needed to stay on the list for new lungs.
While physically slight, Drew remained emotionally stout, with an abiding faith she kept through illnesses and a last-minute transplant cancellation last Easter.
“God has got this,” Drew said.
Still, she admitted, news that lungs were finally available first left her numb, then almost manic.
Her family, and her boyfriend, Jon Beal, were watching the Boston Celtics on TV around 10:45 p.m. when her phone rang, she recalled.
“I was trying to focus. Did they really just say they had lungs for me?” she said. Then she was on her feet pacing through the house without using the breathing tube that was a part of her everyday life.
“I remember I went into my room. I was in my pajamas and I needed something to wear,” she said.
Her bags were already packed, because a patient needs to be ready to move when the call comes for a transplant. Drew said she recalled being glad a fresh shipment of oxygen tanks had arrived so she could take one with her to Boston.
At a toll booth on the way to the hospital, the family waited as a sociable truck driver ahead of them chatted with the only attendant on duty.
“I nearly rolled down the window and screamed I was getting a lung transplant,” Drew said.
Less than seven hours after leaving home, she was in surgery.
That left her parents to wait. They did not get an update for seven hours, but had been told not hearing anything after the first three hours of surgery was a good sign, Joy Drew said.
“You pace, you pray,” she said. “The TV was on in the waiting room, but I can’t even tell you what was on.”
Ashley’s brother, Justin, came north from his home near Washington, D.C., and her mother stayed across the street from the hospital during Ashley’s hospital stay. Her father occasionally returned to Scarborough.
Drew knows nothing of her donor, but knows lungs cannot be taken for transplant from someone who is alive.
“When they told us the donor was (in the hospital), that was a little hard,” Joy Drew said. “I can’t imagine going through that as a mother.”
While waiting for her transplant, Ashley had become very involved helping the New England Organ Bank find donors. In a year, she can seek out the family of her donor and hopes they will agree to meet her.
“It would mean a lot to me. I have gotten to speak to a lot of people on both sides,” Drew said.
An organ recipient still faces the danger of the body rejecting the new organs, or other complications including infections. When she could, Drew blogged about her recovery, and her story was featured at the website set up to promote features of the federal Affordable Health Care Act recently upheld by the U.S. Supreme Court.
Drew did endure complications from the surgery, and underwent a second procedure to clear blood clots and reduce inflammation. The combination of drugs and her body’s reaction to the surgery led to renal failure and rounds of dialysis that she found very difficult.
“I have a lot of respect for people who go through that every day,” she said.
Physical therapies included testing motor skills and small walks around the hall until she could walk and breathe under her own power. She remembered breathing clearly when she was younger, but the new lungs were a challenge.
“I couldn’t figure out how to breathe,” she said.
Her homecoming was interrupted when she spent time at Maine Medical Center in Portland because of dehydration, but Drew said she is finally catching up on her sleep. The staples from her surgery may be removed this month, and she has weekly appointments in Boston.
Her music was once a test of how her lungs were functioning, but playing now must wait until her instruments are professionally cleaned to avoid endangering her health.
“It’s because I play woodwinds,” she said. “If I played brass, we could just soak them in the tub.”
While the devices that kept her breathing have been moved to the basement, Drew now takes a daily regimen of drugs and vitamins to ensure her body won’t reject her lungs.
“You want to make your body ignore there are lungs there that aren’t yours,” she said. “I’m on an insane amount of pills, but they are easier to deal with.”
Scarborough resident Ashley Drew finds breathing easier after a double lung transplant June 8. Born with cystic fibrosis, she was on donor lists for 540 days before her transplant surgery in Boston.
She no longer needs “a million things here to keep me breathing,” but Ashley Drew does need a daily regimen of drugs and vitamins to support her new lungs. “You have to make your body ignore these are lungs that aren’t yours,” she said.