← Return to Nebulizer and saline treatment with daily exercise

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@blm1007blm1007

Sue....Volunteer Mentor
I did the NJH battery of testing in October 2023 due to my needing more than the local pulmonologist's plan....of anti-biotics if I developed MAC. I knew of NJH since the 1990's due to my Mother's having had emphysema and my research at the time. It was too late for Mother. Yes the local pulmonologist told me to get the Acappella but no help directly, just a print out to read on how to do it. Yet all I read in other articles or the instructions that came with the device was to have your doctor set the setting etc. etc. with you. Received no help from him or his medical professionals in his office after two times of reaching out to them for help with it to be sure I understood how to do all. Nor did he teach me or tell me about Huff coughing. SAD what does not exist in the pulmonology departments of the local medical doctors office and health systems. Symptoms, looking back started several years ago and finally diagnosed in August of 2022 after all my visits that I kept arraanging with my primary doctor because I knew there was something dramatically wrong with me. Finally after seeing my continual weight loss and the amount of weight lost he did the C Scan and guess what... BE. He kindly held my hand as he told me the C Scan results. Of course I didn't fully understand all other than I had something seriously wrong. I work out in the yard, my passion. You mentioned that you do also work in the yard. What are the things you do to protect you from soil Mac...or for that matter shower/water Mac.?

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Replies to "Sue....Volunteer Mentor I did the NJH battery of testing in October 2023 due to my needing..."

Welcome to Mayo Connect. You will learn so much from our helpful group!

What did you learn during and after your visit the NJH? Were you able to get any education on airway clearance while your were there? And have you gotten any results from your sputum cultures yet?

Many of us have learned more from the group here than their local pulmonologist - as a rare disease, even many specialists don't see it very often. Have you looked for a local specialist with expertise in Bronchiectasis?

You asked about gardening - yes, I still do it - but I wet down any soil to minimize airborne dust, pay someone else to handle heavy digging and spreading mulch. And when I am going to be in close contact, I mask & glove, shower and wash my garden clothes when I go in.

As for shower/water - my water tested MAC free several years ago, we keep water heater above 130F, and I just don't worry about it. Other people may be more cautious than me. I do drink bottled spring water when not at home.

Feel free to read many of the ongoing discussions, and ask questions of all our members, you will fine everyone willing to help.
Sue

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