I saw the ID doctor on 10/4

He was great. Very thorough, explanatory, and kind. He was confused tho about the aspergillus positive on my bronchoscopy. He said the culture(s) are growing and one, in particular, that has a light beam go through it several times a day IS detecting a fungal growth--but it's not aspergillus. He said this other fungus is rare and more "diff. i. cult." [his emphasis given, while avoiding my eyes] to treat. Hmmm. Because of his reaction and the feeling I got from him, I didn't even want to know the name of it--a first for me. I figure if it turns out to be a false positive on that one, wonderful. If it's something, however, that I will need to deal with, I'll find out the name soon enough and start researching it.

Because the results of the bronchoscopy, however, tested positive for aspergillus, he has warned me that they will likely want another bronchoscopy done. Ugh. They can't give me any anesthesia and there seemed to be little to no sedation either, due to respiration concerns. I remember it all very well. But if it needs to be done, oh well.

He does have me scheduled for a CT scan again next week.

Anyone had a similar--or near similar--experience?

It is getting more difficult for me to keep my oxygen level up; can't walk and talk at the same time anymore. 🤔 Just very grateful for this new ID doctor. 👍🏻

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  • Hi Kate - there are lots of people with experience of difficulties getting diagnosed with aspergillosis in our Facebook groups facebook.com/groups/aspergi... and that is going to be similar to your experience.

    Encouragingly it sounds like you have a doctor who is on top of the situation.

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