If you aren't seeing a pulmonologist, that would be my first step. If you are seeing one, I'd think about getting a second opinion. I'd make sure the pulmo knows your history, just as you've described it. If he doesn't talk about bronchiectasis, tell them you'd like to be tested for that and for NTM. It sounds like you've got something that you still haven't gotten rid of, and they need to start looking for that. Unfortunately, there are a number of candidates, so they shouldn't have any trouble finding tests! Everything you've said points in that direction. Make sure they rule out every potential infection/bug they can think of before you decide this is just the disease progressing. What you're describing isn't normal progression; it's a fast downward slide and those usually only happen if you have some sort of bug.

You're doing everything right except really pushing your pulmonologist to do a good job. Either push the one you have or find a new one who will pay attention and don't let anyone just let you sit. Sometimes you have to give things time to work, but if they don't work, get right back to the doc and let them know. You can always call the office, and I would. Usually an RT or a nurse will talk with you. Talk with them just like you'd talk with the doc. Give them every little detail because they matter. Usually the nurse or RT will talk with the doc and get back to you with what to do next; then you follow up. Don't let them think things are fine when they're not.

Thank you @A MyCOPDTeam Member…yes, through having pseudomonas and then a recurrence I think between my Infectuous Disease specialist and my pulmonologist I feel pretty informed. I was treated with Tobramycin for a year, Bactrim daily (still due to recurring aspiration pneumonia) and at one time Minocycline added to the mix due to a tag-a-long bacteria that was found on a followup culture. I no longer get involved with planting flowers, caring for them or lawn care. All my indoor plants were rehomed. I don’t get near pools, ponds, etc. I don’t venture into parks any more since my distance walking is so limited. I clean and disinfect my nebulizer religiously. I always stand back when turning faucets on so I don’t get the 1st burst of faucet air in my face. I am tested for pseudomonas and Nocardia every time I get a change in cough or phlegm…drs have also told me how both bacteria can lay dormant then flare. It scares me, but I try not to let it control my life beyond what I’m already doing.
Thank you for your input and advice. It is helpful just knowing there is someone else out there that’s heard of pseudomonas and it’s danger. I appreciate it! Take care.

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A MyCOPDT...

Hi Margo. Apart from your Docs and their course of treatments, hopefully they have educated you on the dangerous Pseudomonas bacteria itself.
It is virulent for those with respiratory conditions and very resistant to common treatments and medications. Often, more than one antibiotic (sometimes in co-administration) is needed to fully eradicate an infection.
Hopefully you have been advised to avoid "moist" places such as swimming pools, spas, saunas and hot tubs along with "greening" activities such as farming, gardening and grow-houses. Even so, the Pseudo germs can even be found in cleaner places like hospital laundry rooms and during procedures like intubation and catheters. Bad stuff, indeed! Hope you get some practical answers soon.

@A MyCOPDTeam Member…I’m always so happy to read your input! When in the hospital in April the pulmonologist assigned to me mentioned air trapping as possibly being one of my issues but never elaborated. Then silly me never brought it up to my own pulmonologist because I didn’t give it another thought. I was battling a recurrent bout of a bacterial infection that was kicking my butt so that consumed our conversations. I’ll get that added to my topics to discuss list for my appt next month! I do PLB and found it somewhat beneficial to sometimes to sit down and drop my head between my legs. I’ll also start trying to establish if I can identify a pattern. You are always so helpful.👏👏❤️

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A MyCOPDT...

I have one more suggestion: go to these two websites to learn more about bronchiectasis, NTM and pseudomonas. I think they're all related.....kissing cousins or something.

https://www.bronchiectasisandntminitiative.org/...

www.ntminfo.org

Both of these sites have lots of information, social sites and places you can ask lots of questions. There's also a patient registry for bronchiectasis and opportunities to be involved in research.