Living Well with a Bad Diagnosis - Lung Disease

Monday, October 26, 2015

Get a Proper Diagnosis

I talked a lot yesterday. Two people phoned for advice. It makes me wish I knew more about ILDs but I can only offer my own experiences and what I have observed with others in my support group and pulmonary rehab class.

The last eleven years, I have learned a lot. Mostly, it is so important to get a proper diagnosis.

Sometimes I wonder if the diagnosis of IPF is a "catch all" when there is no biopsy. What does it matter? Ninety-nine percent of ILDs are treated in the same manner, except mine. Hypersensitivity Pneumonitis (HP) often responds to prednisone. My dear friend in Ohio was misdiagnosed with IPF when he actually had HP. After a second opinion at a large facility with an ILD clinic, he was diagnosed properly, treated with prednisone and, after a year and a half, he was back to work on no medication or supplemental oxygen. He has a check up every year. He is alive and functioning.

On the phone yesterday, there was a discussion about an older gentleman who was diagnosed with IPF with no biopsy due to his age but there seems to have been an exposure to mold years ago. I wondered if a month-long run of prednisone might help his breathing. Maybe he actually has HP.

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