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@spectrumcyclist

Long way for you to travel, but if you have a pulmonologist willing to take advice from a group that knows its stuff I can't say enough about Temple University Lung Center in Philadelphia. I found that too many non-research university pulmonologists (i.e., none of those I saw in my small town) did not know what I had or if they knew how to treat it. Penn is also a great choice, but Temple got me in first, and they have taken great care of me.

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Replies to "Long way for you to travel, but if you have a pulmonologist willing to take advice..."

Thanks, but I feel I'm with one of the best having Dr. Winthrop as my ID at OHSU. I've already participated in one of his clinical trials and I'm sure he works with great pulmonologists up there, too. My need is for a more local person... which I have hopefully found in the recommended PA.
It's good to spread the word on good places though and may be helpful to others.
Anna