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Breathing easier leaves Berlin woman thankful



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Desiree Corbeil holds a photo of herself before the surgery that gave her new lungs. (Photo by Erik Eisele) (click for larger version)
February 03, 2010
BERLIN — For most people, breathing is automatic—they don't give it a second though. For Desiree Corbeil, she thinks about it with every breath, and with every breath she's thankful.

"I was really limited. I knew what I could do," she said. "Even going snowboarding, it felt like a chore."

Desiree wasn't a retiree, or a lifelong smoker. She was 20 years old, a recent high school graduate, and not someone who should have had to think about such things.

"It's called pulmonary fibrosis," said Diane Lapointe, Desiree's mom. "She was 19 years old, carrying oxygen around."

Desiree was born with the disease, and had to go on oxygen when she was very young. At first they didn't know what was wrong with her. She spent seven months at Dartmouth-Hitchcock Medical Center in Hanover, and then she went to Massachusetts General Hospital, where they made the diagnosis.

Pulmonary fibrosis is where scar tissue slowly replaces lung tissue, hampering oxygen intake. Its cause is unknown, and there is no known treatment. As a young child with the condition, it was unclear how long Desiree would live.

But she did well, considering. After the first six years, Desiree was able to come off oxygen. She still wasn't able to be active, but she didn't have to cart around an oxygen canister everywhere she went. She went through elementary, middle and high school like most kids, though always with those limitations she had learned to live with.

But then, around the time she graduated high school, the disease awoke.

"Even when I'd take a shower I'd get out of breath," she said.

She went back on oxygen, and her life started to change. She quit going out because she was constantly tired, and when she would leave the house people would stare at her. She started to get depressed. Something had to change.

Unfortunately, things did change—they got worse.

Desiree's heart began to fail. The stress of reduced oxygen in her blood was taking its toll. She lost weight and had to have a feeding tube put in. All by the time she was 20 years old.

Her only hope: a double lung transplant. Without it her body would soon shut down.

"I was scared to death to get it done," she said, but even finding lungs could be a problem.

She went to Boston to register for the donor list, but just doing that meant a barrage of tests. They drew blood and pushed her aerobic capacity, all of which hurt. In the end they determined she was in moderate need of new lungs, not dire, so someone else should get them before her.

The challenge with lungs, as opposed to other body parts, Ms. Lapointe said, is that the donor lungs have to be from someone kept alive on a respirator, not taken from someone like a car accident victim. This meant the supply was even more restricted than other organs, and so there was little hope Desiree would get new lungs.

But they weren't about to give up. Donations are restricted by region, so Desiree went to Ohio to go through another round of testing so she could get on the list in another region.

"She was in the process of getting registered in Cleavland when Boston called," Ms. Lapointe said.

It was the third call they got about possible new lungs, so they were both exited and guarded as they went to Brigham and Women's Hospital in Boston.

They told her they couldn't be sure her body would accept the new lungs. They told her she could die on the operating table.

"I was scared to death, but I was ready," Desiree said.

She has photos of herself leading up to the surgery looking anxious and scared in a hospital gown. They are in two little albums, one titled "Believe" and the other titled "Journey."

"She was only in the hospital two weeks," her mom said, before she was strong enough to leave.

"It's so much different than it was before," Desiree said, "like I'm a new person."

She's had her new lungs for five months now. She will have continue with the checkups that ensure her body accepts the new tissue, but now she is breathing deeply for the first time in her life.

"I'm always telling people, 'You should be an organ donor,'" she said, because it was through someone's donation that she is alive today.

You always hear stories of people like this," Ms. Lapointe said, but you never think of it as being so close to home. But her daughter, from here in Berlin, was saved because someone else died. It doesn't just happen to everyone else, she said.

Desiree is still getting used to the idea that they are her lungs. "I've got someone's organs in me. They're not mine, you know?"

She said she had a tough Christmas because of it.

"I thought about my donor all day."

She wondered how their family felt, it being Christmas and them having lost their loved one, and yet their lungs were here, in her.

She said she wants to connect with them, thank them for giving her a second chance at life.

She might get that chance once it's been a year since the surgery, but for now she has a more important task: to cherish every breath she takes.

That's something she does every time.

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