Patient Comments: Pulmonary Fibrosis - Experience

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

Comment from: Vallecitos, 75 or over Male (Patient) Published: November 04

I have pulmonary fibrosis going on 15 years. The cause of my problem may be the medicine I take. I've been taking Remeron for over 20 years. I read that these anti depression drugs may cause the problem. My father died from pulmonary fibrosis. He was 83 years old. I was never exposed to anything harmful to my lungs. I need oxygen if I walk or exert myself. I do not need oxygen if I am in a lower elevation. I plan to move to Dallas or Indiana where I have no problem breathing. Where I now live the elevation is 6000 ft. I would like to know if indeed Remeron may be the cause of my problem.

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Comment from: willy, 35-44 Male (Patient) Published: July 30

I suffered with achalasia for a decade and was diagnosed 4 years ago. I had the new POEM (per-oral endoscopic myotomy) procedure by a very skilled surgeon, the best thing I ever did. What a life changing surgery!

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Comment from: kalkat, 75 or over Female (Patient) Published: June 20

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2007 by VAT (video-assisted thoracoscopic) surgery and was put on large doses of prednisone and oxygen 24 hours a day. I actually believe I contracted this from the asbestos in my home. I used to sweep the loose particles from my ceiling before I knew better and painted over it. My husband also contracted IPF and died in 2011. In my case however, my pulmonologist n Sacramento (2012) put me on Imuran and declared the IPF as being in remission. I discontinued the Imuran after about a year upon contracting a MRSA infection. I continued the O2 therapy until after moving back to the Bay Area. At that time I saw a new pulmonologist who tested my O2 during exercise and took me off the oxygen. I'd been dependent on it for six years.

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Comment from: jayne, 65-74 Female (Patient) Published: March 18

I have sarcoidosis which the doctor says is the cause of my pulmonary fibrosis. I am on oxygen and very short of breath. I have never had a cigarette but lived with a smoker for 25 years. I am a registered nurse and worked in the ICU for 25 years. Of interest is my husband also had sarcoidosis which never gave him a problem. Being short of breath is not fun. So far I have no edema. I am on prednisone and ASA (acetylsalicylic acid).

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Comment from: I_care_for_my_Mom, 75 or over Female (Caregiver) Published: January 31

My mom was diagnosed on January 28, 1986 (same day as the Challenger tragedy) with pulmonary fibrosis. She was 54 years of age. Mom never smoked, drank, worked in factories or the like, being a stay at home mom. She was put on oxygen 24/7 which helped. Several years later, she just "got better"! She no longer needed any oxygen, went to work full time and was a picture of health! When diagnosed, the medical field deducted it was due to our bird business (we raised, trained, sold pet birds). Once diagnosed, we no longer kept any of the birds, even our house pets. Unfortunately, almost 6 years ago, my mom was given a pair of her favorite canaries that she adored! When the dry cough started again, we took her to the doctor and our worst fear was confirmed. She indeed had this disease rear its ugly head again.

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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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