By David Harry

Staff Writer

It is never difficult to get a smile from Ashley Drew, even as she assesses her current health condition.

“My lungs basically don’t work anymore,” said Drew, 23.

Born with cystic fibrosis, a genetically transmitted disease that fills her lungs with mucus and prevents proper digestion, Drew needs a double lung transplant.

A benefit concert by student musicians at 7 p.m. next Wednesday at Scarborough High School will raise money to help pay transplant expenses not covered by insurance.

Drew, a member of the high school class of 2004, had long concealed her condition while running track, playing volleyball and playing saxophone, flute and piccolo and serving as president of the high school band.

“People treat you differently when they think you have a possible weakness,” Drew said.

She was born with a disease the Cystic Fibrosis Foundation says affects 30,000 people nationally through genes carried by about 10 million people. Those with the disease have median life expectancy of 37 years, up five years from a decade ago.

Drew’s mother Joy Drew said her daughter was diagnosed when she was 3 months old. Up to that point, Joy Drew and her husband Tim Drew worried about their daughter’s persistent cough and consumption of 50 ounces of formula daily, Joy Drew said.

Doctors thought Drew might have sleep apnea until Joy Drew said she saw a TV show on cystic fibrosis and tasted her daughter’s skin.

“She was as salty as a French fry,” Joy Drew said – a clear symptom of the disease because it causes excessive chloride in sweat.

The athletics and music made it seem Drew had a normal childhood, but it included medicine, inhalers, therapies like patting her chest and back to keep mucus loose, and high-calorie diets to keep her weight up, her mother recalled.

After graduating Scarborough High School in 2004, Drew attended the University of Maine in Orono.

“It wasn’t hard sending her off to college – I wanted her to be healthy enough to stay there,” Joy Drew said.

After earning a degree in music education, Drew began work on a graduate degree. Her health began to deteriorate last winter.

Drew said she began to feel fatigued, endured shortness of breath, and coughed blood. The early part of this year was spent in intensive care at Maine Medical Center in Portland, she said.

“I went through the worst winter of my life – I don’t think anything can be worse,” Drew said.

Renee Richardson, who teaches instrumental music and directs concert, symphonic and wind ensemble musicians at Scarborough High School, organized the concert that will involve about 130 students.

Richardson is one of the few who knew of Drew’s condition, she said, and saw how Drew struggled without ever indicating what she was enduring.

“Here came that smiling face every day,” Richardson said about teaching Drew.

Richardson said news of the needed transplant was a shock when she heard it a month ago. She also said Drew was smiling as she told her she needed two new lungs.

Drew said she only cries in sadness when she cannot play her music.

“When I want to see where my lungs really are, playing shows me,” she said.

Drew said forced expiratory volume tests show her lungs are working at a rate of 25 on a scale of 100. A rating of 30 is one baseline for determining whether a transplant is needed, according to Dr. Phil Camp of Brigham and Women’s Hospital in Boston.

Camp said a team of at least 20 professionals is now evaluating Drew to possibly place her on the list of patients needing a transplant.

The transplant will likely come from an organ donor on life support, said Sean Fitzpatrick, director of public affairs for the Waltham, Mass.,- based New England Organ Donor Bank.

Of the more than 1,600 lung transplants performed nationally in 2010, one was from a donor who was not on a ventilator at the time of the donation, Fitzpatrick said.

Fitzpatrick said the donor bank matches donors with patients needing kidneys, liver, lungs, heart, pancreas or section of small bowel. Becoming a organ donor can be done when filling out a form to apply or renew a driver’s license or at www.DonateLifeNewEngland.org.

The circumstances needed to recover organs for donation are rare. While donors can range from young adults to senior citizens older than 70, they must be kept on life support after being declared brain dead so the organs remain viable for use, Fitzpatrick said.

Camp said the matching process can be complicated as well, and involves blood type and ensuring a patient’s body does not have antibodies that could lead to immediate rejection of a donated organ.

Livers and kidneys are more durable, Camp said, and can be delivered across country if a match is determined. Because blood needs to flow through a heart or lungs within four to six hours after removal for the transplant to be successful, timing is essential.

Patients who may need any kind of organ transplants are evaluated on a variety of factors, Camp said, including their overall health and whether other organs are in the end stage of disease. Quality of life is a primary consideration for any patient getting evaluated, both before and after the transplant surgery.

Camp said the operation may last six to 12 hours, but the procedure of transplanting lungs and having blood flow through them takes substantially less time. Doctors try to get transplant patients off a ventilator within a day and on their feet in the first two days after surgery.

Dr. Hillary Goldberg, a Brigham and Women’s surgeon who is part of the transplant team, said a patient will likely need 15 to 20 kinds of prescription drugs in the first year after surgery to stave off infections and also suppress the immune system that might attack and reject the new lungs.

Camp said 40 percent to 50 percent of those with cystic fibrosis who receive lung transplants live 10 years after the surgery.

Drew estimated the surgery will cost $150,000 and currently spends $20,000 a month for medicine. While she is on her mother’s health plan, the family is uncertain what will be covered as part of her surgery and recovery.

“There are so many costs – not just the hospital bills,” she said.

Her faith will be the basis for her recovery, Drew said.

“God has got this. He has given me some knowledge and I am just rolling with it,” said Drew, who attends New Life Church in Biddeford.

Fundraising efforts are not limited to the Scarborough area. The University of Maine football team has hosted events and New Empire Apparel, a clothing company based in the Bangor area, is selling T-shirts to benefit the Air for Ashley fund. For more information, visit www.newempire.bigcartel.com or the Air for Ashley Facebook page.

Admission to the May 26 concert is $5 for adults and $3 for students and senior citizens. Bake sales held at school concerts this month have raised more than $1,000, Richardson said.

Staff writer David Harry can be reached at 282-4337, ext. 219