Suggestions on specialty clinics currently on big 3

Posted by ladonnahc @ladonnahc, Aug 3, 2025

Can anyone suggest a specialist clinic? For my mom. Shes 79 years old. Shes active (or was) and in good health otherwise. First dx with MAC in 2010 it was treated successfully. Continued with mild cough then dx with BE but always says “mild” on imaging. Now MAC being treated again for the second time. She’s been on the big 3 for 12 months now with one culture showing neg for MAC. I’m not sure if she should have been tested more but we had to push for any testing. She has had pseudomonas show up off and on. Symptoms are only getting worse. She coughs up lots of junk daily. She does airway clearance with arobika valve, vibrating vest, takes mucinex, nebulized albuterol and breztri inhaler. Most recent CT shows new consolidations and nodules! We’re really disappointed with that because shes been working so hard to get better. She asked for a sputum culture and the first report says “abundant pseudomonas” I’m wondering if that’s what they are seeing on my CT and the increased symptoms she’s experiencing. Her pulmonary doesn’t have availability appointments for months and her ID dr obviously isn’t a pulmonologist. Although I think her care here is ok I don’t feel like they truly understand the disease or have the most up to date treatments or literature etc. We’re willing to go to a specialty clinic but we need to know the best place as it would be quite a trip for us as we live in Tennessee. Thank you to anyone with advice!

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She gets her care with an Erlanger hospital affiliated Dr. It is a teaching hospital. It just seems that the Dr. is quite busy as she cant get into see her, often refers her to just follow up with ID dr, and has to see the NP when anything comes up. They don't seem to understand the disease as they have put her on conflicting meds like cough suppressants etc. The ID dr has just decided to treat her Pseudomonas again so I guess we will go ahead with that. After reading and researching I just wonder if she could be trying other more up to date medicines. I called several offices Vanderbilt, UAB, Emory, and so far I got the most feedback from UAB so maybe we will schedule there. thanks for your reply.

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Several of our support group members go to UAB too.

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My insurance didn't cover Mayo but covered NJH. At NJH, I was there for 2 weeks and had a team of healthcare professionals. I don't think I could have gotten better care.

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One negative sputum test is highly inconclusive. My May culture tested negative, yet I am still sending monthly cultures and returning to NJH in 2 weeks for my follow up. NJH follow ups are not necessary, I choose to do so. Typically, after the initial assessment, follow ups are done with local doctors and NJH advises.

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