Saving Work...Peggy's Story.....Great...one newspaper down 1 million to go

[Guest guest]

It's scary when you run out of air.

" Think of a straw filled with cotton. Hold your nose and breathe

through that straw, " said Peggy , who is all too familiar with

the feeling.

The 65 year-old was sitting in a brown leather reclining chair on a

recent morning as she described her moments of breathlessness. A

clear thin tube branched off in her nostrils and then wound behind

her ears, and snaked on her side, on to the chair, on to the carpet,

finally arriving at a supplemental oxygen tank that made known its

presence by a constant hiss, as if it too were breathing.

" If you listen to my lungs, they'll sound like Velcro, " said.

Her lungs crackle as its small air sacs try to open and close in the

face of scarring that's slowly choking them, one by one.

This is not what signed up for. This Idiopathic Pulmonary

Fibrosis, a little-known, deadly, lung disease, is not what she

wanted for her retirement with her husband of 40 years.

" Both of us are still grieving for the life we wanted, " she said.

It all began with a trip to the doctor's office in September 2004.

and her husband had just moved from Tampa, left their three

grown children and young grandchildren behind, to live in a peaceful

property in the Forest. They were starting to get to know their

neighbors and the surrounding towns and cities. , who has had

numerous surgeries - from gallbladder removal to total hip

replacement - wanted to say hi to her new family doctor.

The hello ended in a lung biopsy. Later, another doctor told her that

she has IPF, " a serious lung disease. "

Her daughter, , went home and looked it up. She was devastated

by what she found: that IPF has no treatment, that the prognosis is 2

and a half to 5 years, that who-knows-what is slowly scarring her

mother's lungs until she would no longer be able to breathe.

" I couldn't get it out to tell her, " said Renfro. " I was

crying all the time. "

Pulmonary Fibrosis, or scarring of the lungs, occurs when the small

air sacs in the lung, called the alveoli, begin to harden. The

scarring doesn't heal; rather it builds up, until it takes over the

entire lung.

It is not clear what causes Pulmonary Fibrosis, although it has been

linked to prolonged exposure to occupational and environmental

contaminates or dusts, genetics, autoimmune diseases such as

Rheumatoid Arthritis or certain drugs.

" The causality changes all the time, like women's styles, " said Dr.

Rosenzweig, president of Pulmonary Fibrosis Foundation. When

the cause of PF is not known, as in Collin's case and most other

cases, it is called idiopathic.

The disease is not common, but it's not rare either, said Dr. Naftali

Kaminski, director of the Center for Interstitial Lung

Disease at the University of Pittsburg. Almost 400 of 1400 patients

the center follows have IPF.

An estimated 50,000 new cases are diagnosed each year, according to

the Pulmonary Fibrosis Foundation.

Roughly 40,000 individuals die from IPF each year, including well-

known figures Goulet and Evil Kneivel. Almost the same number

of people die from breast cancer annually. Rosenzweig believes the

number of deaths from IPF is even higher, because many patients also

suffer from heart disease and their cause of death is marked as heart

attack or stroke.

More than 200,000 people in the United States have the disease and

there are at least 5,000,000 cases worldwide.

Rosenzweig, who has had IPF for the past 15 years, started the

foundation to raise money for research and bring awareness about the

disease. The disease is still overlooked and misdiagnosed.

Currently, the National Institute of Health and a number of

universities are trying to find causes and treatments for the

disease. Some universities are also conducting clinical trials,

although they are still at the preliminary stages.

Today there is a much better understanding of IPF among practitioners

and researchers and there are more drug studies compared to 10 years

ago, Kaminski said. He estimated that within the next two to five

years there will be a drug available that would affect the disease's

progression.

takes a few medications, one for her anxiety and one for her

sleep, but none are for treatment. Her only option at this point is a

lung transplant, and she has decided she doesn't want it, because it

comes with too many what-ifs, including the possibility of rejection

and a lesser quality of life.

So, her lifelines for now are her strong faith and the PFF's online

support group, where she spends roughly five hours every day.

" It's a very terrible disease and most people become depressed, " for

they perceive the diagnosis as a death sentence, Rosenzweig said.

But not .

It's true that IPF has robbed her of the most basic household chores:

she can't cook, she can't bend, she can't vacuum, she can't go

shopping, she can't just jump in the shower, but is perky and

strong. She doesn't believe in the numbers and doesn't let them bring

her down.

She wants to start a local support group.

" I don't want to be a depressed black hole . . . I have peace with it

through my faith in God, " she said.

" You're living with death and all you can do is keep it at bay.

You're not dying today, you're not dying tomorrow, so you have today

and tomorrow, " said.

Her daughter, , with as strong a faith as her mother, looked

from across the room. The woman who had cried for months after

finding out about her mother's disease is peaceful now.

" We're going through it with peace, love, free of panic, " she

said. " Because I know when my mom takes her last breath on this

Earth, she'll take her next breath in heaven. "