Patient Comments: Pulmonary Fibrosis - Experience

If known, what was the cause of your pulmonary fibrosis? Please share your experience.

Comment from: Thomas6311, 65-74 Male (Caregiver) Published: December 30

My father was just diagnosed with pulmonary fibrosis two days ago. The doctor said he has full lung involvement and 50% lung volume. I have read about this disease this weekend, I get the prognosis is not great. He is 65, quit smoking over 30 years ago and had radiation when he was 36 for a cancer which never returned. We believe he has had the fibrosis for at least a year and fear he is in to last stages already.

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Comment from: Melanie, 55-64 Female (Patient) Published: August 19

I got pulmonary fibrosis with radiation treatments when fighting breat cancer. It has been 5 years now. I recently have been told my rheumatoid factor is 63, which is high and it's because I have PF. I am totally baffled by this. I also found out I have Sjogren's which is high at 267. I just keep going strong and when I'm tired I rest. Thank goodness I don't worry about the dust or lint!

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Comment from: 55-64 Female (Patient) Published: August 13

I just got notified that I have pulmonary fibrosis my RA doctor told me I have had it for awhile. When I cross the street I can barley make it. Both my parents died from this disease I felt depressed before with RA now I do not know which way to turn. I have neck pain from morning to night

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Comment from: Nanarose, 65-74 Female (Patient) Published: August 06

My pulmonologist now says I have pulmonary fibrosis. I have never smoked but had a mild case of pneumonia in 2011. Since then I have gotton worse. I was on prednisone last year and now am on a low dose which is not doing much of anything for my shortness of breath. I was an active 71 year old, volunteering in my hospital and now I a home all of the time. It is so depressing and I understand now what everyone means to be home bound. Good luck to you all.

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Comment from: Gail, 65-74 Female (Patient) Published: May 16

I was diagnosed with pulmonary fibrosis in January of 2013. I was a smoker for many years, and found out my COPD is actually emphysema. I had pneumonia in January, and finally had a CT scan, which showed the PF. I am 71 and the coughing and the feeling of being out of breath has changed my life. The pulmonary doctor wants to wait until July for another CT scan, but I feel he should do it sooner, for it's getting rapidly worse. I don't have idiopathic pulmonary fibrosis (IPF). They know what has caused this in my lungs. I know there is no cure and really no treatment. I know I should just stay as active as I can and breathe deep. I know that this has happened to me because my own body is trying to heal the injuries caused by smoking. It's like when you cut your leg; your immune system begins to heal. Well, this is what it is doing to your lungs. But in trying to help, it is creating scars on the lungs, and making it worse. I know they have put a timespan on this terrible disease. The worse is they are trying so hard to find a way to help us, but it's something new. My wish for everyone who has this – hang in there, for life is never over 'til it's over. And life is really all about moments. Live in your moment, one day at a time.

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Comment from: neurology sue, 55-64 Female (Patient) Published: May 13

I was diagnosed in January 2013 with pulmonary fibrosis. I'm in shock because I have been diagnosed with neurological problems since August of 2009. That's when I had a cervical laminectomy for cervical stenosis. Since then, nobody has been able to figure out my muscle weaknesses in my arms, legs, bladder, and head drop. ALS and MS have been ruled out. I don't smoke and haven't worked since the surgery.

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Comment from: Pat, 65-74 Female (Patient) Published: April 22

The main lesson I have learned since being diagnosed with PF is, when you feel tired – rest.

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Pulmonary Fibrosis - Treatments Question: What treatments have been helpful with your pulmonary fibrosis?
Pulmonary Fibrosis - Symptoms Question: What were your symptoms associated with pulmonary fibrosis?

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