Saturday, May 31, 2008

Cystic Fibrosis teen awaits double-lung transplant

I have many friends whose lives have been impacted by Cystic Fibrosis and I'll continue to highlight personal stories such as this. Not only do patients suffer from the devastating effects of the disease, but their loved ones experience a lifetime of stress as well.

"The chronic disease affects the lungs and digestive system because of a defective gene that causes the body to produce unusually thick mucus that clogs the lungs and leads to life-threatening lung infections"

From in Michigan:

by Heather Lynn Peters
HART TWP.(Michigan) --Â In many ways, Natasha Miller is like any other teenage girl: She has a dog named Daisy, loves desserts and has a driver's permit.

But unlike her peers who are looking forward to new cars, new jobs and new adventures this summer, 17-year-old Natasha is hoping for something else -- a new set of lungs.

Having different "needs" than her friends is something Natasha, who was diagnosed with cystic fibrosis as an infant, has learned to embrace.

"I like the fact that I'm different. I'm not in a good way, but being like everyone else is not any fun. I like having responsibilities," she said.

"Everyone is like, 'I've got to worry about my hair!' and I'm like, 'I have to worry about my medicine.' "

Natasha, a junior at Hart High School, was diagnosed with the disease when she was 3 weeks old. For years she's managed the disease with prescription drugs and a pulmonary vest she wears at home to help her breath.

But now, in an effort to prolong Natasha's life, physicians say the teen needs a double lung transplant.

The articulate, self-proclaimed "loner" said she doesn't like to think about the transplant, but understands, "I need it."

Natasha hopes after the transplant people will forget she's sick.

"Kids at school say, 'I know she's different -- I don't know why -- but I know she's different.' It's hard for people to understand it," she said.

The chronic disease affects the lungs and digestive system because of a defective gene that causes the body to produce unusually thick mucus that clogs the lungs and leads to life-threatening lung infections, according to the Cystic Fibrosis Foundation. Because the defective gene is in all the cells of the body, a new set of lungs is likely a temporary solution.

Natasha currently lives with her father, Phil Miller, a 19-year-old brother, and her grandmother, Sally Lancaster, at 1655 W. Lever in Hart Township.

Lancaster said Miller cares for his daughter "24-7." The single father has adapted to the role of full-time "caretaker" and understands Natasha's disease, Lancaster said.

"When it's there from the get-go, it's like riding a bike or learning to jump rope. It's just there. It's not unusual. It's become an everyday thing," Lancaster said.

Lancaster describes Natasha as "very determined" and someone who tries her best to be "an average child."

Natasha's family is hoping to buy her time. In 2006, the median age of survival was 37 for those living with the disease, according to the foundation's Web site.

"It's going to happen," she said of losing Natasha someday. "But you want to postpone it as long as possible. You just have to say, 'Today's today and this is where we're at and we're good.'"

Natasha, a former member of the high school drama club, currently interns at the Oceana Herald-Journal, enjoys photography, drawing and writing.

"She is a joy to be around," Lancaster said. "She can't run or do heavy exercise or walk a long way. That gives her a problem. But she compensates: When she's tired, she rests, and when she's energetic, she goes."

Natasha receives two treatments a year at St. Louis (Missouri) Children's Hospital, which specializes in children's lung transplants.

In 2003, she was placed on a donor list, but Natasha wasn't "sick enough" to receive any organs at that time, Lancaster said.

However, this past year Natasha has been sick often, making her "eligible" to receive donated lungs, said longtime family friend, Pastor Lorraine Boucon of Hart Congregational United Church of Christ in Hart.

When the organs are available, the Millers likely will have to move near the hospital in order to receive proper medical care, Boucon said. Boucon is heading up a benefit Friday for Natasha at the West Michigan Masonic Center in Hart to help cover various expenses.

"It could be six months before the (lungs are) available. We don't know how long it will be, but we know it could be expensive," Boucon said. "That's the reason we're trying to raise money."

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