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@magwil01

A fellow bronchiectasis introduced me to the classes but they would not be classes for you. The leaders do not allow any input or correction. That is one of the parts that bothers me. I have learned a lot but it is very strict and my questions have been shut down. I will take any info you have. Thanks.

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Replies to "A fellow bronchiectasis introduced me to the classes but they would not be classes for you...."

I understand your search for answers, and do not want to denigrate anyone trying to help, but Lung Matters strict protocols are all about what worked - for her. Each of us is different, and needs to find what works for us, which I did by asking a million questions - here and on another discussion on NTM-ir.

Even the well-known experts, like Dr Pamela McShane at UT-Tyler in Texas change their minds and recommendations from time to time, based on their experience with hundreds of patients, and by following the latest research - for example, here is her most recent Webinar on airway clearance:


She listened and learned - she did not ignore outside questions, opinions or evidence. She will tell you clearly that not everyone needs albuterol, why she recommends for you not to use the Aerobika while you neb (and why), and what commonly accepted practices may not be helpful. She also stresses exercise, as rigorous as you can tolerate, as an airway clearance method. My lungs and aging body can no longer run, but I can walk at a pace that makes my friends pant, and do some pretty vigorous yoga - and by the end of my session, all the crud in my lungs comes out easily - no need for postural drainage and and special breathing techniques.

My own pulmonologist now believes in 7% and 3% saline nebs, even though she did not 5 years ago. And my ID doc now recommends Arikayce if you don't become negative for NTM after 6 months of the Big-3 where previously, he just upped the antibiotic doses to daily.

Water is a topic for another day.