Patient Comments: Interstitial Lung Disease - Experience

Please share your experience with interstitial lung disease.

Comment from: Breathless101, 55-64 Female (Patient) Published: November 16

My adventure with interstitial lung disease started 15 years ago with an ARDS (acute respiratory distress syndrome) diagnosis. Since then it has been hospital stays almost every year with what is described as a pneumonia type illness. On and off stays that included a ventilator. No one can tell me why I have this other than a possible autoimmune disease of some sort. I've also been diagnosed with diffused alveolar hemorrhaging syndrome where the capillaries around the alveoli bleed. Now I'm at the point of being short of breath with any exertion with my heart going in and out of atrial fibrillation and waiting on my next hospital stay. I'm fortunate that I can still work at the moment and thankful I'm still here.

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Comment from: Paul, 65-74 Male (Patient) Published: March 29

I am a 32 year Navy veteran recently diagnosed with interstitial lung disease (ILD). All the things I was exposed to over the years could fill a book; everything from asbestos to jet exhaust. I've had colds/flu that went into pneumonia and other illnesses contracted in foreign countries. I had semi-annual sinus infections and was diagnosed and treated for asthma. It didn't help. Now it all makes sense. Unfortunately, it's too late to do something about it.

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Comment from: DIANA, 55-64 Female (Patient) Published: February 29

I have always had shortness of breath in grade school when playing sports, and always teased because of my breathing hard. Interstitial lung disease was not diagnosed until 8 years ago with a biopsy. Recently I was put on oxygen to help but my level falls into the 70s with oxygen when trying to move around and work so oxygen is really not working and there is no other option except to sit and do nothing which is not healthy either. So I do what I have always done which is try to live my life and breath but as I get older it is a lot harder.

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Comment from: brenda, 55-64 Female (Patient) Published: January 05

I have interstitial lung that developed from scleroderma. I have had this lung disease diagnosed about two years ago. I have shortness of breath especially when being active like chores and climbing the stairs in my home. I have had scleroderma for sixteen years. I am taking CellCept, but am not sure if it is helping. My doctor just told me to exercise because it could help me feel better. I hope this will be helpful to someone.

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Comment from: Missy, 55-64 Female (Patient) Published: September 22

In 2012, I began coughing, and the problem has gotten worse. I believe that I was exposed to black mold; due to a hailstorm my room leaked, and the wall behind my desk sunk in. However, when the repairs were done, no mold was found. I, however, found some under a curio that sat in the corner of my office. I removed, it, and replaced the carpet with a tile. I have been seeing a pulmonologist who gave the interstitial lung disease and asthma, but he refused to treat me for pneumonia, which I knew that I had. Finally, my primary physician prescribed some strong antibiotics, which helped get rid of some of the debilitating symptoms (a great tiredness). We have tried other antibiotics since then, and x-rayed my lungs, finding that the mass has disappeared. I use albuterol inhalers and liquid mist with a nebulizer. However, I continue to cough and spew phlegm that even catapults across my hand or handkerchief as I try to block the cough and protect others from germs and bacteria that it potentially carries. I am hoping to find a doctor who specializes in this disease and get some more aggressive help in fighting it.

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Interstitial Lung Disease - Symptoms Question: What symptoms did you or someone you know experience with interstitial lung disease?
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