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bevmac (@bevmac)

Mac + lung cavity

MAC & Bronchiectasis | Last Active: Sep 14, 2020 | Replies (83)

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@sueinmn

@debminuet In your situation, I would definitely consider a workup at National Jewish Health or Mayo, if only to confirm that your (more MAC savvy) doc is on the right track.

After 18 months on the 3 antibiotics, 6 months daily, my body was in full rebellion. So last December, with my ID doc & pulmo, consulting with NJH, we decided to stop & see, only using Flovent, 7% saline 1X day & airway clearance. So far, so good. Made it through winter, when I usually get bronchitis &/or pneumonia, and through 2 major allergy seasons, TX & MN, without any illness and minimal need for levalbuterol nebs. Lung scan will be repeated in Dec, sooner if I get symptoms.

I have recovered most of my energy, though none of the weight I lost, and still have no appetite, so must be vigilant about eating enough. As for using the Big 3 to prevent, that will not be something I choose to do – I was too tired and sick from the meds. It will be caution & watching – my docs are happy with that strategy, even though we all think treatment will have to happen again at some point. I get the feeling that is becoming a more prevailing philosophy with MAC, since no matter how long we stay on the meds, it seems we are never really "cured", but always at risk for recurrence. Maybe by the time I need treatment again there will be something better?

Can you produce a sputum sample, either on your own or using saline nebs, so you can avoid a biopsy? So much easier on the body.
Sue

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Replies to "@debminuet In your situation, I would definitely consider a workup at National Jewish Health or Mayo,..."

Sue I see many people talking about saline nebs what does this help with?

Sue, you said “ , only using Flovent, 7% saline 1X day & airway clearance.” My question: does “airway clearance” involve using a compression vest? Don

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