HP & IPF Confusion Questions.... HELP!!!

[Guest guest]

OK, here is the confusion over IPF and HP. In 1997 I was diagnosed during my first "attack" in Long Beach Memorial. They said Interstitial Pneumonitis. Now I learn that PF and IP are interchangeable terms. It was during the rainy season in CA and we were right across highway from beach.

In 2001 my misdiagnosis by a TN doctor was Asthma. I lived on a river right outside Smoky Mountain National Park and could not tolerate the damp evenings outside. Coughing and dyspnea would get very bad. New house, no mold inside.

When, after 3+ years the "asthma" would not improve except with Prednisone, I was sent to an allergist who said I did NOT have asthma. Then to pulmonologist and open biopsy. Biopsy said PF. Since I had no known cause, they called it IPF. Later, with slides sent to Mayo and Duke for opinions and the 5 months of prednisone did a very good job of clearning it up (extensive ground glass and honey combing aside), the pulmonologist said he thought it was IPF with an added aspect of HP. I have severe dyspnea with any exertion at all whether HP is bothering me or not.

My pulmonologist here in Utah thinks it is just PF. Fact is, though, I cannot tolerate anything with mold and go into near respiratory arrest if I have a severe exposure. Prednisone eventually brings me out of it and I use Advair inhaler daily, adding a Qvar inhaler prn. Albuterol helps slightly if needed. Sorry to be so long winded but without the timeline it is very confusing.

Thanks for info and input. It is a learning process and I need all the teaching I can get. I don't feel like there are more than 4 or 5 years left for me. Just call it intuition. It has been 12 years now... not bad!

ann