Patient Comments: Pulmonary Fibrosis - Experience

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

Comment from: V Laxy, 45-54 Female (Patient) Published: January 09

In 2011 I contracted pulmonary fibrosis (PF) probably after a 45 minute walk on wet grass daily (in an open ground) for about 30 days as part of my exercise regimen. It started with a dry cough and mild temperature, and fatigue on exertion. A CT scan confirmed it and I am now on minimum daily dosage prednisone (7.5 mg), azathioprine and N-Acetyl. The disease progression has been slow, but spikes during colder climes needing step up in steroids. I have low immunity and do a lot of home rehabilitation and yoga exercise as part of pulmonary rehab with daily slow walk on cardio tread mill. I read about PF patients opting for stem cell therapies and also drug Actimmune. I have to discuss these with my doctor, who is rather conventional and loathes trying new stuff.

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Comment from: Sharon, 65-74 Female (Patient) Published: October 24

I have pulmonary fibrosis. I had a cough. I noticed that I was slowing down. I was always active. I was a soloist in the choir and was having a hard time singing. I was hospitalized and they did a CAT scan and found the fibrosis. They did a biopsy on the lobes of my lungs. They put me on 6 liters of oxygen and steroids. The pulmonary doctor told me that I was going to die and said there was nothing he could do for me. I am no longer on steroids. That was 2 years ago. The scarring is about the same. My oxygen level drops when I walk. I can't do much. My husband does everything for me. I am attached to a 50 inch hose. I worked in a clothing factory and breathed in fibers and dyes and whatever was in the fabrics as I sewed, which I think caused my pulmonary fibrosis. I have a good positive attitude and enjoy each day. I never thought that I would have such a debilitating illness. I was always so active. I still haven't made the call to hospice.

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Comment from: Raewyn, 65-74 Female (Patient) Published: March 04

My pulmonary fibrosis was created by the drug amiodarone which was given for heart arrhythmia. It has been a battle for the past year. Previously I was fit person. I lost a lot of faith in our health system. I am trying to stay positive.

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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: Erick, 65-74 Male (Caregiver) Published: May 12

My Father had idiopathic pulmonary fibrosis (IPF) as it is known in Australia. After 10 years of having been static and not on oxygen or any treatment, he rapidly deteriorated in 2 weeks and passed away in 2 days. Doctors could not do anything other than make him comfortable. It is a sickness that nothing is known about how to treat or prevent or stop. He was going to start on a new medication that had far more side effects than the IPF has and it has only 40 percent success. More needs to be done to understand this sickness as it is not known why and how it starts. Dad passed away at the age of 72. He however found that some medications did assist him. Panadeine Forte (has codeine in it) did help him breathe, he took 3 a day. Oxygen was of no use as it did nothing to assist him. His journal said that he kept in communication with people around the world who too found that there was no treatment. Stem cell therapy is still at early stages, perhaps that is the solution. Wish you all the very best and keep positive. Like my dad said, I wish I had 1000 years to do all I wanted.

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Pulmonary Fibrosis - Treatments Question: What treatments have been helpful with your pulmonary fibrosis?
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Pulmonary Fibrosis - Cause Question: If known, what caused your pulmonary fibrosis?

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