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

[Guest guest]

Bruce... thanks for posting this. Peggy: what a story. Again, I'm sure your story will bring others to you. God works through people, we know that.

Big warm hug to you ladybug- Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

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 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."

[Guest guest]

that would be great. Thanks. I firmly believe as big as this group is we could raise awareness in this country. Someone is going to give PFF a LOT of money for research, I just feel sure of it. We just all need to get the word OUT. It was so easy just to have her here and talk.. thats it. and I know this group can talk..LOL Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Great article.....I think I am going to call someone I know at our local Fox station.  Maybe we can get more coverage.  Peggy was/is great!!!!  Saving Work...Peggy's Story.....Great...one newspaper down 1 million to goIt'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."

[Guest guest]

Peggy, What a truly wonderful article. . . and to think you were worried. All of the qualities you regularly bring to the board, faith, optimism,courage, strength and a caring spirit came through loud and clear. I am sending it to everyone I know. Sarcoid/PF 3/2006 California 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 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."

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[Guest guest]

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 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.">