1. < MAC & Bronchiectasis
Profile picture for Sue, Volunteer Mentor
Mentor

You can find great MAC/Bronchiectasis Doctors Close to Home

Posted by Sue, Volunteer Mentor @sueinmn, Sep 16, 2024

Almost every week, someone aske if they have to go to Mayo or NJH or UT Tyler or ... to find a great doctor. Today I confirmed that the answer is "NO!"
I met my new pulmonologist, someone I have tried to connect with for five years. She practices in my local clinic system, is everything I had hoped for. She is part of the network of outstanding BE/NTM doctors across the country, is on a number of study and policy committees, and believes in digging deeply into her patients' health and histories to provide stellar care. She is also a participant in the study of long Covid

Today she spent over an hour with me, ordered a number of tests I have only read about here, cheering Mayo Connect, asking me for links about airway clearance to share with her other patients, and expressing dismay that several tests have been neglected for too long. The icing on the cake - she pulled up the results of a heart CT I had this AM and interpreted them for me!

The takeaway - keep looking - the gems are there, we just need to find them. I'm sure she would be at Mayo or NJH, but for the fact that her husband is a well-respected pathologist & prof here.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 17, 2024
In reply to @suzek "Thank you, Sue. I was diagnosed with MAC and BE several months ago. I see a..." + (show)
Profile picture for suzek @suzek

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.

Jump to this post

When I ran into roadblocks with getting referrals from specialists, I turned to my primary and she was happy to help. If you have a good relationship with your PCP, it might be worthwhile to ask there for a referral?

REPLY
1 reply
Profile picture for historyfan
historyfan | @historyfan | Sep 17, 2024

Sorry, I don't know what MAC is. I have Tracheomalsia. Is it the same?

REPLY
Profile picture for suzek
suzek | @suzek | Sep 17, 2024
In reply to @sueinmn "When I ran into roadblocks with getting referrals from specialists, I turned to my primary and..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

When I ran into roadblocks with getting referrals from specialists, I turned to my primary and she was happy to help. If you have a good relationship with your PCP, it might be worthwhile to ask there for a referral?

Jump to this post

Thank you. She told me she would so I called her this morning. My
Rheumatologist took my appointment time to talk about this. She thought it
might be easier to get into Vanderbilt.

Sue Kluger

REPLY
Profile picture for blm1007blm1007
blm1007blm1007 | @blm1007blm1007 | Sep 17, 2024
In reply to @sueinmn "I offered the information to my doc when she was talking about trying to impress the..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

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.🙏

Jump to this post

I thought about doing the same thing with the two local pulmonologists I have seen since they had not told me about AirWay Clearance Therapy/Methods themselves....I thought about carefully asking them if they would be interested in having the airway clearance information websites/you tube videos I have found. So again, thanks Sue.....I will move "forward and onward" with my thoughts of asking them and as well finding a doctor locally that is not 'jaded' or so frustrated because their patients don't have the self discipline to do what they need to do for themselves and often expect the doctors to have a miracle pill/cure up their sleeve so that they, the patient, don't have to work so hard at helping themselves. I had a discussion with my wonderful PCP about this and how he handles it....and he implied you just learn to cope with it. Also, as with many things there is that thing called politics in the medical field, and finances, that also plays a part in what happens to our good doctors and neither helps them or the patient. (Off my soap box now.) It was helpfull to hear your journey with finding doctors and the changes you have gone through with doctors for various reasons. We are not alone and often in the same boat, for all of us, all over the country in finding doctors for ourselves. Barbara

REPLY
Profile picture for jenniferlp
jenniferlp | @jenniferlp | 2 days ago

Hi Sue:
I am actively looking for a specialist in my area. I have spoken to a very nice woman at the Bronchiectasis & NTM Association who is doing some initial guidance for me. I expect to hear back from her. Before I begin this regimen of antibiotics, I want to consult with another Dr.
Thank you for all your guidance and information.

Looking for a gem here in Los Angeles.
My primary came recommended by my pulmonologist. So I am afraid they are joined at the hip. Primary would not be a good source for that gem I am searching for.

REPLY
2 replies
Profile picture for blm1007blm1007
blm1007blm1007 | @blm1007blm1007 | 2 days ago
In reply to @jenniferlp "Hi Sue: I am actively looking for a specialist in my area. I have spoken to..." + (show)
Profile picture for jenniferlp @jenniferlp

Hi Sue:
I am actively looking for a specialist in my area. I have spoken to a very nice woman at the Bronchiectasis & NTM Association who is doing some initial guidance for me. I expect to hear back from her. Before I begin this regimen of antibiotics, I want to consult with another Dr.
Thank you for all your guidance and information.

Looking for a gem here in Los Angeles.
My primary came recommended by my pulmonologist. So I am afraid they are joined at the hip. Primary would not be a good source for that gem I am searching for.

Jump to this post

@jenniferlp Hello- You might message @paxmundi who is in northern California. If I am correct she has learned of an excellent pulmonologist in southern California.
Barbara

REPLY
Profile picture for ginay
ginay | @ginay | 2 days ago

Hello Sue,
I am new to this group.
I, too, am looking for a pulmonologist for bronchiectasis and MAC in Los Angels or in Southern California. I am also considering, if there is one you can recommend, Mayo Clinic, Arizona (in case there is no one in my area).

Thank you.
GinaY

REPLY
1 reply
Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sueinmn | 2 days ago
In reply to @ginay "Hello Sue, I am new to this group. I, too, am looking for a pulmonologist for..." + (show)
Profile picture for ginay @ginay

Hello Sue,
I am new to this group.
I, too, am looking for a pulmonologist for bronchiectasis and MAC in Los Angels or in Southern California. I am also considering, if there is one you can recommend, Mayo Clinic, Arizona (in case there is no one in my area).

Thank you.
GinaY

Jump to this post

@ginay Foepr each of you looking for care in your area, please take a look for Bronchiectasis Centers here:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
Ixm sorry to say that aside from my own awesome pulmonolgy team in Minnesota, I have no personal knowledge of docs around the country.

REPLY
Profile picture for jbud12
jbud12 | @jbud12 | 1 day ago
In reply to @jenniferlp "Hi Sue: I am actively looking for a specialist in my area. I have spoken to..." + (show)
Profile picture for jenniferlp @jenniferlp

Hi Sue:
I am actively looking for a specialist in my area. I have spoken to a very nice woman at the Bronchiectasis & NTM Association who is doing some initial guidance for me. I expect to hear back from her. Before I begin this regimen of antibiotics, I want to consult with another Dr.
Thank you for all your guidance and information.

Looking for a gem here in Los Angeles.
My primary came recommended by my pulmonologist. So I am afraid they are joined at the hip. Primary would not be a good source for that gem I am searching for.

Jump to this post

@jenniferlp hi, did you find a specialist in the LA or Southern CA area? I too am looking for a second opinion, or someone more specialized in MAC. Thanks!

REPLY
Profile picture for rosa80
rosa80 | @rosa80 | 9 hours ago

Me too looking for specialist in Los Alamitos area.

REPLY
View MoreView Less
Please sign in or register to post a reply.