That is so nice of you and thank you for all this insight. What a bummer - repeat testing of all labs and scans...I think my pulmonary dr. or someone warned me about this some time ago and I backed off from getting a consult. Now if I can pull off the phone consult with my rheumatologist - wow that would be great. I've just contacted some Orlando pulmonary ppl who claim to have exp with vasculitis of varying types and I think I will have them do the bronchosope first in the hopes they will sample the right stuff and not just bug hunt! If that result is scary then I'll have to deal with Dr. Lee in person it seems and repeat the whole mess. It's so strange because my problems started with rapid declining kidney function and now that is stable and somewhat improved and my lungs are very unhappy and my asthma is at its worst ever.
thanks again for helping me with this
Birdie - thanks for reassuring me about the radiation - i have read scary things like too many lung scans can cause lung cancer etc. ah...the internet! google is not always your friend!
I know my treating doctors have consulted with experts from different places including Mayo. How they did it or how it was done I am uncertain? I know in some cases it was a professional colleague and most likely a friend. I know Mayo does a lot of this kind of consultation and advertise having such consultation services at hundreds of other clinics around the world but I don't know any of the details. I know Mayo does like to repeat lab testing but they have also accepted my prior recent testing from other facilities they trust.
Knowledge is power! Wisdom is using it to make good decisions!
I'm going to pray they "trust" my tests if I end up needing them in person but I am definitely going to go for the consult approach first after I get the bronchoscope since that seems to be absolutely unavoidable. Scary but unavoidable..I hate being sedated etc and then waiting for results....but that's the only way to get to the end!
Bookmarks