Patient Comments: Pulmonary Fibrosis - Experience

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

Comment from: kokolopez209, 45-54 Female (Patient) Published: October 02

I've had horrible asthma since I was 10 or 11. I am now 46. Everyone I know grew out of their asthma but I grew into mine and it progressively has gotten worse. Just 3 weeks ago I was working full time but started having problems with my asthma which went from my regular inhaler, nebulizer and prednisone to what I thought was the flu to an emergency room visit where the x-rays and CT scans show masses on my lungs, pulmonary fibrosis and calcification of the aortic valves. I just learned this yesterday and am devastated and terrified! I have been out of work (office job) and have an urgent referral to a pulmonary specialist. My PCP (primary care physician) won't even think of talking about me returning to work until after seeing the specialist. I'm not sure what lies ahead of me.

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Comment from: Anne, 55-64 Female (Patient) Published: September 29

At 30 I contracted chicken pox. I ended up with varicella pneumonia, ARDS (acute respiratory distress syndrome), 4 1/2 months ventilator dependency, including jet, 5 holes and surgery to repair 1 hole.

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Comment from: merrywhiterose, 55-64 Female (Patient) Published: January 21

About 25 years ago my young daughter squeezed a puff ball in front of my face. I gasped, inhaling the mold spores. I became short of breath with a cough, and developed hives all over my body. My doctor took x-rays and they showed my lungs were covered with mold spots. He gave me pills for itching and an anti-inflammatory. I suffered for a year before I felt better! Now 25 years later the spots on my lungs are now scars. I still have a cough but no itching or shortness of breath. I'm now very allergic to mold so I'm on Zyrtec and nasal sprays.

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Comment from: Black velvet, 65-74 Female (Caregiver) Published: January 09

My boyfriend died and he had pulmonary fibrosis. He was only 61 I watched him die and it was horrible; he was gasping for his breath. He went to the hospital for emergency surgery on his colon. He quit eating and he wouldn't get out of bed and walk. He developed pneumonia in his left lung. Within 7 weeks he was dead.

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Comment from: paaky1, 65-74 Female (Patient) Published: January 08

I was diagnosed with idiopathic pulmonary fibrosis. I answered all questions starting with "Did you" negatively. I was treated for breast cancer in January 2010 with radiation. I honestly believe that's what caused my IPF. I have always been healthy until the breast cancer showed up. I had pulmonary rehab for nine weeks, twice a week. I'm trying to stay active. I have oxygen concentrator at home and portables for when I need it. At home my choice is not to use it unless I'm doing something that exerts me too much. I have to have it shopping or walking at the mall. I try to do that at least 4-5 times a week. Sitting and sleeping do not require oxygen at this point. When I get tired, I rest. I'm trying to be wise and one day at a time is my motto.

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Comment from: larry, 55-64 Male (Patient) Published: December 16

I was diagnosed with PF (pulmonary fibrosis) in Feb 2012. I may have had it for 1 or 2 years prior to that. I worked full time up until June 2013. My pulmonologist has theorized that it may have been caused by acid reflux. I ate big meals for years that were too close to bedtime mostly due to my crazy work schedule. I had the "Nissen fundoplication" procedure in late June 2013 to fix the reflux. It almost immediately worked. I no longer take omeprazole or anything for i.e. am now currently on the lung transplant list and have been since Aug 1, 2013. I have had 3 "dry runs" to receive new lungs. I take life day by day and remain in good spirits and go to pulmonary rehab 3 times a week.

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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?
Pulmonary Fibrosis - Cause Question: If known, what caused your pulmonary fibrosis?

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