You can find great MAC/Bronchiectasis Doctors Close to Home

Lucky you, happy for you and hope I do find a gem in OKC as I continue to seek the gem out! I often have wondered these last few months why the pulmonologists I have seen here if OKC do not give out handouts for sites to help patients with their BE, such as airway clearance. Wonderful that you can be a source for your new pulmonologist and that she apparently is open minded and all that one hopes for in a doctor.
Barbara

VERY lucky find Sue. Not the usual with local Drs. Count your blessings!

Very lucky Sue. Mine although from northwest medicine group - Chicago- is passive and not very helpful but I cannot find anybody else around. By the way how was your CT and were you able to produce a sputum sample?

Sue, how did you find her?

Wonderful! Great news! Can you give me her name please? is she at the UofM? I've had my evaluation at Mayo and would like to find someone local here in Mpls.

I offered the information to my doc when she was talking about trying to impress the importance of airway clearance on all of her patients, and she immediately handed me her clinic email address.

We all need to remember that these docs can be hard to find because BE and NTM are rare conditions. I am fortunate to live in a population center of 4 million people with many teaching hospitals and well-established large multi-specialty clinical practices. But it took me six years of persistence to get to her.

@irenea8 I have found that there are many very good to great docs, but they get beaten down by "the system." This woman is irrepressible, and hasn't let it happen. It probably helps that she has been with the clinic long enough, and is popular enough with patients and all the other staff, that she gets a little more leeway. My pain doc is the same way - when she couldn't keep up with the rigors of primary practice, she "reinvented herself" by going back for more training in pain and geriatrics - on her own time & dime. I am about to meet my newest cardiologist (3rd this year) tomorrow and heard he is like this.🙏

I guess it just depends on where you live. Here in SE Iowa it can be very limited. We have the U of IA where my pulmo is but as far as I can tell he is the only one in the whole state that specializes in BE, MAC etc. It can take more than a year to get an appt with U of IA Drs!

I’ve been monitoring this site since May 2023 when I tested positive for MAC. I was diagnosed in 2013 at Mayo with BE. I am not on big 3 but am on watchful waiting. I have a good ID Dr but am searching for a new pulmo as mine does not have BE or related issues as a focus nor does she want to.
I’ve greatly appreciated the insights and help offered here.
I, too, live in Mpls and would greatly appreciate the name of the new pulmonologist that you, Sue, have and are now seeing.
Thanks, Judi

I have contacted her to ask if she is accepting patients from outside her clinical organization. I will let you know when I hear.

Thank you, Sue. I was diagnosed with MAC and BE several months ago. I see a Pulmonologist and an ID Doctor. Most of the information I found was through my own research which is where I have found groups like this. There are also some wonderful ladies I have spoken to by phone several times. I live in the Huntsville, AL area and it was suggested I go to UAB. They aren’t taking self referrals so I’ve turned to my primary care for help. The ID Doctor won’t refer me unless the treatment isn’t working nor does she want to answer questions. Trying to get answers from the pulmonologist’s staff has not been good, either. If this doesn’t work, I’ll ask for help in getting into Vanderbilt. So, you’re right. Finding a good Dr. is very important. I feel like I was told what I have, here are some things you should do, go figure it out.
I can’t thank everyone in the group enough.