1. < MAC & Bronchiectasis

I need help finding a new pulmonologist, please.

Posted by annagh @annagh, 2 days ago

My pulmonologist at Asante in Medford, Oregon, who first diagnosed NTM-MAC has gone and did not leave any suggestions as to a replacement. The last pulmonologist I saw in that office denied that I even had bronchiectasis, which had been diagnosed by primary care and previous pulmonologist, so I don't want to just "take my chances." Fortunately, Dr. Mohammed did refer me to Dr. Winthrop at OHSU, and I have felt fortunate to have the two of them as my team. I just sent a message asking Dr. W if he has a recommendation. Unfortunately, OHSU is an overnight trip for me, if not 2 nights, so I feel I need a pulmonologist who is closer. I live near Mount Shasta, so even Medford is 1 1/2 hours each way.
If anyone has any recommendations, or can direct me to an up-to-date list of NTM experienced doctors, I'd be very grateful.
Thank you,
Anna

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scoop | @scoop | 2 days ago

Not sure if there is a doctor on this list near you but this is a good place to start.
https://ntminfo.org/united-states-of-america/

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1 reply
annagh | @annagh | 1 day ago
In reply to @scoop "Not sure if there is a doctor on this list near you but this is a..." + (show)
@scoop

Not sure if there is a doctor on this list near you but this is a good place to start.
https://ntminfo.org/united-states-of-america/

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Thanks, Scoop. Unfortunately, there are still no doctors listed near me. But, I did get a message from the assistant to my leaving pulmonologist, saying there is a PA in the group who sees lots of people with MAC and also talks with Dr. Winthrop. Patient reviews on the PA are very high. I have an appointment to see him in early March, so I may have my solution.
Anna

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spectrumcyclist | @spectrumcyclist | 13 hours ago

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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annagh | @annagh | 12 hours ago
In reply to @spectrumcyclist "Long way for you to travel, but if you have a pulmonologist willing to take advice..." + (show)
@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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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

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