By Dan Aceto

Staff Writer

When Ashley Drew of Scarborough learned she would be listed as a recipient for a double lung transplant, she didn’t quite know how to react.
 “The first thing I did was I put down the phone and I was like, ‘What am I supposed to do, should I document this moment somehow?’” Drew said.

Drew, 24, who has suffered from cystic fibrosis since birth, learned Dec. 17 she would be placed on the transplant list. The condition has left Drew’s lungs functioning at 25 percent of their normal capacity.

The chronic lung disease affects nearly 30,000 people nationwide, according to the Cystic Fibrosis Foundation. The disease clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food, according to the website.

Her brother, Justin, was the first person to hear her good news.

“He was so excited. I said, ‘You’re the first person to know,’ and he goes, ‘the whole world is about to know,’” Drew said. While she was touched by his offer to share her news on Facebook, Drew said she soon convinced him to wait so she could tell her parents before they found out online.

When Joy Drew learned her daughter was put on the transplant list, she said she was elated.

“It had been such a long process. It seemed whenever we were getting closer, there would be more hoops she would have to jump through, but I’m really glad it happened,” she said. The family first began the process of applying for the transplant in March.

Drew has undergone a wide range of testing in preparation for the transplant and said she spent only three weeks out of the hospital between the first week in September to the week before Thanksgiving.

A sinus operation led to “flare-ups” of her condition.

“I started to go into respiratory distress two weeks after the operation,” Drew said. “My lungs took a big hit from the surgery and I ended up spending most of my fall in the hospital.”

Drew said she needed the surgery before the double lung transplant to open her sinuses in case doctors needed to operate again to treat an infection. 

Drew said the average wait time for a donor is approximately 140 days, though doctors will not tell patients where they stand on the list. She also said the health of each recipient can affect placement. 

“If someone gets sicker, they might bump you up, so you just kind of wait. That’s the reason my phone doesn’t leave my side,” Drew said. “It’s no longer, first come, first served.” 

Drew said she thinks she may be higher up on the list because of time she spent in the hospital this fall.

She said most patients with her same lung function require use of oxygen to help them breathe and doctors have been puzzled why she doesn’t need assistance.

Drew said she believes her lungs were strengthened because she played sports, including track, her whole life and regularly played wind instruments. “There were a lot of things doctors said I shouldn’t do, such as play a wind instrument,” Drew said. “But I believe you need to live your life and pursue your passions. I want to skydive, but the doctors said I need to wait until after the operation because the altitude could be a problem.”

Drew, who was pursuing her master’s degree in instrumental conducting at University of Maine at Orono, said she credits her musical ability with helping her learn to breathe from the diaphragm instead of using her upper chest. She looks forward to the day when she is able to play for an extended amount of time like she used to.

“The fact that I’m a musician, it’s driving me nuts. I used to practice three to four hours a day,” Drew said. “When I get my lungs I’m going to play all the time. I’m just excited to feel like I used to, to feel like a normal person again.”

Drew said that her condition worsened when she left for college in the fall of 2009. She has since returned home to Scarborough from Orono so she can continue to receive care at Brigham and Women’s Hospital in Boston and other pulmonary rehabilitation work in Greater Portland. 

“I’m pretty sure I have a full-time job full of doctor’s appointments,” Drew said.

Joy Drew said having her daughter at home instead of school has helped them better manage her care.

“It’s always hard to see loved ones suffer, you wish you could just take it on yourself, and she’s doing so well,” Joy Drew said.

Ashley Drew said she takes more than 20 pills a day to treat her cystic fibrosis and that after receiving the lung transplant she expects to take approximately 20 more.
She said she expects to be in the hospital for two weeks following the transplant. She’ll visit Boston for further care every weekend and eventually once every six months.

Joy Drew said once the family met the team that would care for Ashley at Brigham and Women’s it helped ease some of her fears.

“Once we met the team down there, the surgeons and people that would be caring for her, that was a relief. They were very down to earth, so that helped a lot,” said Joy Drew. “We’re just anxious for her to get those lungs and get to the point where she can go back to school and see her friends, and I don’t blame her, I felt the same way when I was that age.”

Between her everyday treatments for cystic fibrosis, Drew said she does her best to keep herself motivated.

 “I spend a lot of time online. Thank God for Facebook, it helps me stay in touch with the real world. I’ve also become a spinster and an avid watcher of Wheel of Fortune and Jeopardy,” Drew said with a laugh. “It’s like, ‘So this is what my life has come to?’ At least I haven’t started collecting cats.”

Drew said she has since started a blog to keep friends and family updated on her current condition at www.airforashley.com

“I think people like my sarcastic nature,” she said. “People don’t want to read about a Debbie Downer.”

“I have to admit, I’m rarely sad and everyone always says to me that I have every right to be sad,” Drew said. “I always remain optimistic about everything; being pessimistic is a waste of time and energy for one.”

Drew said she has both good and bad days. 

“For me, I feel good. Walking down the hall I get winded, but for me that’s good,” Drew said. “I can’t stand on my feet for more than two hours now and I used to working all the time. So it’s strange going from that to a place where I don’t feel well enough to be up and about.” Drew said she used to wait tables at the Dunstan School Restaurant, and was accustomed to being on her feet for long periods of time.

Drew said the Scarborough community has been more than supportive and several fundraisers held by the high school band booster club and the “Air for Ashley” group have helped raise money for medical expenses. Although her transplant will be covered by her health care plan, she said many other associated costs are not.

“You don’t realize the outside medical costs, such as traveling,” Drew said.

Although it has been a long journey for Drew, she said without hesitation there’s one thing she’ll do after her transplant.

Go for a run. 

“I probably shouldn’t say that though, since I’ll still be in the hospital,” Drew said.

“I’ll probably play my piccolo,” she said before she paused to reflect.

“You know, I wouldn’t be surprised if I ate a huge steak with potatoes and a Mountain Dew. Not that I wouldn’t do that already.” 

Staff Writer Dan Aceto can be reached at 282-4337, ext. 237.