In the eighth grade, Ashley Drew decided to keep a secret. It wasn’t an embarrassing crush, sneaking out past curfew, or any of the everyday cover-ups of middle school life.
It was her lungs.
Ashley, 23, of Scarborough is one of 30,000 people in the United States with cystic fibrosis, a genetic condition which spurs infection and scarring of lung tissue, making breathing difficult and eventually impossible. Now, after keeping her affliction a secret for years, Ashley needs help. She needs new lungs.
Ashley ran track, played volleyball and attended band camps as a child. She played wind instruments and eventually mastered the piccolo, tenor sax and flugelhorn.
Then Ashley got a lung infection and rumors spread. Kids treated her differently. Her field trip group, worried she was contagious, asked her not to go to Quebec with them. CF isn’t contagious — and she went to Quebec with a different group.
That’s when she decided to keep her condition a secret.
“I didn’t want people saying, ‘There’s Ashley Drew,’ and then lowering their voices to say, ‘She has cystic fibrosis,’” Ashley said.
Keeping her secret was difficult through high school and while attending the University of Maine. She uses a nebulizer daily to help her breathe. She has to swallow or inhale 15 medications a day, many to help her digest protein. On good days, she spends an hour in a black vest that inflates like a blood pressure cuff and then drums against her to shake phlegm from her lungs.
For Ashley and others with CF, these treatments make normal lives possible. In 1955, CF was expected to be terminal by the start of grade school. According to the Cystic Fibrosis Foundation, the life span for people with CF has increased, and in 2008 the median age had risen to 37.4 years.
At the University of Maine, Ashley practiced four hours daily and took on leadership positions in the UMaine Symphonic Band. Striving to meet the expectations of other musicians, she exceeded them.
“Even though no one else knew what I was proving, I knew what I was proving,” she said.
Music always came first. In spring 2008, her temperature hit 101 and she needed to be hospitalized. She fretted: She was scheduled to perform that week.
“I told the doctors, ‘This is the deal. I have a concert on Thursday. You have to let me go, or I’m not coming in.’”
She performed with a PICC line — a long tube which serves as an IV — inserted through the veins in her wrist and pushed through the veins in her arm until it reached her chest. She hid it beneath the sleeve of her sweater and played nine songs. No one noticed she was any different.
But just before Christmas 2008, Ashley woke up from a nap and couldn’t breathe: She had gone into respiratory failure. She was rushed to Maine Medical Center in Portland, where her palms were spiked for blood acidity tests four times daily and a quarter-size hole was cut into her throat so she could breathe.
“It’s easier to breathe out of your neck than your mouth,” Ashley said. “It’s actually kind of cool.”
She was sedated through the New Year. After that, sitting in a chair for five hours was considered an accomplishment. She was fed through tubes. After her tracheotomy, she spoke through her neck, but not with a talk box — “I didn’t sound like that scary lady in those smoking commercials,” she said.
Because electric ventilators are reserved for unconscious patients, Ashley had to manually pump a blue balloon for air if she left her bed. The first time she walked on her own, she was surrounded by nurses. She pumped the balloon, staggered to a window and, seeing the sun, burst into tears of joy.
“It’s hard to explain how someone could care about the sun so much,” Ashley said.
As she recovered, she sneaked into the hospital lobby at night to play the piano. Tables filled with textbooks and papers surrounded her bed. As the tour director for the UMaine Symphonic Band, she faxed schedules and booked the band’s hotel rooms.
“I would e-mail her the information she needed as tour director to get things done, because I knew that’s the way she wanted it,” said Curvin “Chip” Farnham, a professor of music who worked with Ashley when she was a conductor for the symphonic band.
Ashley graduated in spring 2009 summa cum laude with a 3.7 GPA.
Now Ashley faces a challenge she can’t solve with perseverance alone. She needs a double lung transplant. New lungs, free of scar tissue, won’t cure her disease. But without them, the scarring in her lungs will spread until she can’t breathe. A healthy pair of lungs function at 98 percent capacity, Ashley said. Her lungs are at 26 percent capacity.
According to the Cystic Fibrosis Foundation, 150 lung transplants are performed on CF patients in the United States annually, about half the number needed. Hospitals must find a biological match. While some donations come from living donors, most are from recently deceased organ donors.
Ashley is waiting to be accepted into a donation program, according to her father, Tom Drew of Scarborough. This involves a battery of tests in Boston and physical preparation. For Ashley, that means raising her body mass index. Ashley is eating fast food to pack pounds on to her slight frame and sleeps with a feeding tube that releases 1,200 calories overnight.
While Ashley has insurance, a number of costs related to her surgery won’t be covered, such as travel to and from the hospital for tests. If a donor is found, Ashley will need to be in the hospital within a matter of hours, which will require a helicopter.
“I can’t hide this anymore, because I need help,” Ashley said. “Not just money. I need support.”
Help and support are coming, beginning with last Thursday’s University of Maine Symphonic Band performance at the Collins Center for the Arts where donations were accepted.
Three other Symphonic Band events will include tables for donations, Curvin Farnham said:
• 7 p.m. Tuesday, April 13, Phillips Exeter Academy, Exeter, N.H.
• 7 p.m. Wednesday, April 14, York High School, York.
• 7:30 p.m. Thursday, April 15, Merrill Auditorium, Portland.
“There’s risks in everything,” Ashley said. “I have a choice: die or get a double lung transplant.”
Ashley said her faith in God has helped calm her.
“I know something big is going to happen in my life,” she said. “He has some huge plan for me, and I’m not going to let this get in the way.”
Donations are being accepted and handled by Tom Drew’s employer at Air for Ashley c/o Allied Home Mortgage, 360 U.S. Route 1, Suite 300, Scarborough, ME 04074.
Tom Drew said anyone interested in helping can contact him at 885-5070, ext. 118.