1. < MAC & Bronchiectasis

Lung Matters Protocol

Posted by lvnl @lvnl, Jun 27 7:02pm

Hi, the info shared here has been so helpful as I'm now diagnosed with MAC after quite a few years of asymptomatic bronchiectasis. I see some back and forth about Lung Matters Protocol, could someone post the actual site (url)? Googling turns up several confusing results.
Thank you.

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mimimary | @mimimary | Sep 7 11:54am

This is for lvnl, who asked about the Lung Matters Protocol website. It is actually a facebook group called Lung Matters: Covid, Bronchiectasis, MAC, NTM, etc. Quite a title! You need to be on facebook to apply (it is a closed group which is good, eliminating the stupid comments that open groups get.) "https://www.facebook.com/groups/786232145610757/?hoisted_section_header_type=recently_seen&multi_permalinks=1558230095077621&__cft__%5B0%5D=AZVL6dfKeUipNincpuHAFS9ZxXhO9Osu5Ce1uQ1zWxIkM7mTlR6TnfAnaNEz_QO6B4K2B9DcO8fHIzLGOweTlcxI-uo2_1tT09-HzzcfVZaQ9lo2kB9P6gTxPdyxzverAUsRMdfv8gOGwxdDQheDYLJkPZ58o3TWtUk5sFW7_NQI8hhPCeijfWqFdgsqbNrS8Yc-3k5tm6qyXG9QYG7OWFCi&__tn__=-UC%2CP-R
This URL should get you there. It is extremely informative and interesting. The attitude is rather stringent, but you learn SO much. I recommend it.

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dispatchpat | @dispatchpat | Sep 7 4:51pm
In reply to @sueinmn "Yes, tubing is not something you can clean or sterilize. If there is moisture left in..." + (show)
@sueinmn

Yes, tubing is not something you can clean or sterilize. If there is moisture left in it after you neb, run the compressor for a few minutes to dry it out. Replace the tubing every 2-6 months, depending on what the pulmonologist recommends - your neb cups need to be replaced too, and they come with new tubing.

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Thanks!

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