Patient Comments: Pulmonary Fibrosis - Experience

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

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: 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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Comment from: Jrf341, 55-64 Female (Patient) Published: January 14

I had an 8 week long illness which in the beginning I thought was fall allergies. However, I began having coughing fits, fever, chills, shortness of breath and extreme fatigue. I had started a new job and put off going to the doctor. Finally, I couldn't walk across the room without being short of breath and light headed. My doctor diagnosed me with reactive airway disease and bronchitis. I was sent for a CT scan for an unrelated issue which showed scarring and bronchiectasis. I'm just newly diagnosed, my doctor is referring me to an allergist which I don't understand. I feel that I should be seeing a pulmonologist.

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Comment from: Blessed, 55-64 Female (Patient) Published: February 20

I am a 57 year old female who was diagnosed with pulmonary fibrosis 2 years ago this June. I have an excellent pulmonary physician who has put me on CellCept to slow down the scarring process. Most days I feel really well and still work a 40 hours week. There are days when it is very difficult to manage because of the extreme weakness, but I keep going.

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