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@btrolley Sometimes our doctors do hit the limit of their experience and expertise. Some pulmonologists are quite comfortable treating the usual diseases, Asthma, COPD and Emphysema, but rarely see other more unusual conditions. What do I mean by rare? About 9% (9/100) Americans have asthma, 5% (5/100) have COPD and only .2% (2/1000 have ILD. This not only meant they will see and treat many more case of asthma & COPD, but that there are well-established treatment protocols to follow. With ILD, usually a secondary condition to other lung issues, the path is not so clear.
Here are questions I would ask before undergoing a bronchoscopy:
What do you expect to learn from the bronchoscopy, and will it change my treatment?
Will you be collecting mucus for culturing to see exactly what infection keeps returning in my lungs?
Do you think it is time to refer me to someone who treats complex or unusual cases like mine?
I don't necessarily think a bronchoscopy is a bad plan - just that there needs to be a clear idea of what the next step(s) might be.
Replies to "@btrolley Sometimes our doctors do hit the limit of their experience and expertise. Some pulmonologists are..."
Where I am, I can't imagine a situation where anybody other than an experienced respirologist would order a bronch. I think the docs performing the procedure would also want to know why it is being ordered. They don't do these tests willy-nilly as some kind of fishing expedition.
In my case the docs did not know exactly what they were looking for but they had to get a better look inside my lungs. I had gone from being very healthy and active to being very sick (critical condition) in the course of a week and the nature of my inflammation was such that they could not get a really good diagnosis from the CT alone.
The procedure was done on Day 4 of a 55-day hospital stay.
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Thank you very much. These questions are very helpful!