Can you have both nodular and cavitary MAC?

Posted by dls224 @dls224, Aug 30, 2023

Good Morning everyone,

I’m still trying to figure things out as best I’m able with what little to no information I’m able to extract from my current local pulmonologist.

I just found out about all of this about 5 weeks ago! Had no idea I had bronchiectasis, or any other thing besides lung scarring we were monitoring.

Been acting on it as fast as I can and learning as fast as I can.

I have had 4 chest scans since Jan 2022 and apparently something worsened on my July of this year scan. The original pulmonology group I was with that had been monitoring it and downplaying the situation with me; delivered all of this to my unsuspecting husband and I in an awful manner.

I found a new pulmonologist the very next day who’s been doing it over 30 years; and he was recommended online as a local NTM Dr at Trinity pulmonary group Hospital nearby me.

Got into him quickly on a cancellation and we did sputum samples that came back negative.

I did the bronchoscopy first week of August and the AFB smear was negative the same day of the bronchoscopy; then two weeks later it came back positive (last week) and is now being sent out for further testing. No other results have come in at this time which is 3 weeks post bronchoscopy.

Meantime I’ve been researching nonstop and doing all I can to get into a COE ASAP! I have an appt to talk to the intake nurse at NJH in Sept; on a waiting list to have my records reviewed at UT in Tyler. I have also called and am waiting to hear back from Dr Swenson office in Atlanta for scheduling.

I had a tele appt with a wonderful Dr at Mayo in Jax and she is having me send sputum (at my request) since I got the AFB positive to be tested in their lab. I can’t even get an answer what lab is doing my current sensitivity testing with the positive result. The communication with the Drs office I’m with now is awful.

The Jax Mayo Dr seems great but I can’t manage to get the appts she’s asked for scheduled and I call multiple times a week since our tele appt! At this point I was told I’m on a cancellation list to try to get the appt with her there before next year!

My local pulmonologist is very old school and doesn’t welcome self education apparently and is intolerant and dismissive for the most part. Wouldn’t even explain the positive AFB to me just said we need further testing! Doesn’t believe in airway clearance!

So I’m all but out of that office once I have full results. He’s not a bad Dr but definitely not an expert with NTM from what I’ve learned about the importance of airway clearance!

I don’t know if I would be defined as having cavitary MAC or not based on going over my radiology report of my last scan again and this is where I’m very confused. I definitely fit the skinny white middle aged woman profile for nodular.

The radiology reads - nodular opacities tree and bud like spread thru out both lobes; one lower left lobe cavity.

I looked thru the Mayo Drs notes and she seemed to feel the cavity was related to bronchiectasis and wasn’t suspecting it was related to NTM which we had no positive result for at the time of meeting.

Does anyone else have NCF bronchiectasis and MAC or NTM with a lower lobe cavity ?

And would this be considered cavitary MAC ?

Desperate to try to figure this out! Any help is welcome! Thank you.

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

You sound very similar to myself. I'm now 65 (tall skinny male), been treated for 5 years. Started with UCHealth in Colorado, 6 months at NJH, now back to UCHealth. My cavity is in the RUL though. My current treatment is for aspergillus which developed last year.

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@rstel7272

You sound very similar to myself. I'm now 65 (tall skinny male), been treated for 5 years. Started with UCHealth in Colorado, 6 months at NJH, now back to UCHealth. My cavity is in the RUL though. My current treatment is for aspergillus which developed last year.

Jump to this post

I hope you feel better soon.

How do you feel about NJH?

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They have some excellent Doctors, I unfortunately drew a Dr with bad communication skills. There was insurance hassles, their record keeping and record transfer is very poor. I think that's why they want to duplicate every test you recently had. A lot of gerd testing (that I feel was unnecessary but went with them anyways)

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