Re: Re: Thanks Joyce

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Thanks Joyce I appreciate your kind words. How are you feeling today? I hope better. We just had a scare thinking my dad had prostate cancer on top of PF, but thank GOD we just found out today he doesn't. Have a nice night! Cyndi (DAD PF 12.05)Joyce wrote: Cyndi, I cried watching the video (I think because I miss Peggy so much), then I really cried reading the article.

That reporter did a bang up job. I am going to send her a Thank you. I am so proud of Peggy and her sweet daughter. I know that you are that kind of daughter, too, Cyndi. Trust me, not all of us have that kind of support. Not whining, just stating fact. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> > > > > > > Tissue Please. Peggy you are so amazing. I enjoyed your story so much and was

crying by the end. I loved the last sentence. Good Job PEGGY. I AM SO PROUD OF YOU!> > Cyndi (DAD PF12.05)> > Saving Work...Peggy's Story.....Great...one newspaper down 1 million to go> > > 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 i! n 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.">