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Recently diagnosed

MAC & Bronchiectasis | Last Active: Mar 29 9:10pm | Replies (35)

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@blm1007blm1007

Hi Kathy -
I found out that the CVS Micropore Tape this year bothered me with taping my mouth shut at night. Returned it to CVS and bought the 3M Nexcare which Scoop mentioned. Yes to 3 M Nexcare. How are you doing with the night mouth breathing. The tape helps me keep the night build up of mucus "juicy" rather than it getting thick and sticky as it did when I wasn't taping my mouth closed. I really think that the years of sleeping with my mouth open, before I learned I was, affected the lungs. I can't see how it would not have dried out more than just my mouth by sleeping with it opened night after night year after year and such that I woke up with dry mouth. What do you think??
Glad to hear your pulmonologist told you to take Zinc and C. I have been taking it along with Garlic for infections. Of course the D3 also.
I have been wondering if before Covid, for those having been diagnosed with BE, were the doctors suggesting BE patients to wear masks (N95's) when out it public etc. ?? Do you know.?? Especially since you are a long time patient at NJH. I was diagnosed with BE a few months after we all learned of the Covid outbreak. I didn't have a bout of Covid until Feb of 2024.
Carb counting for most of us is so important. I can't go without pasta at least once a week but keep the portion so much lower than what I would indulge in during my pre 50 years of age. Ice cream and pasta are my one cheat and limit both. Pasta once a week ice cream once a month. Sacrifices, sacrifices.
Noted that you go to NJH in May. Had you continued with NJH since moving to AZ and therefore your local pulmonologist and ID doctor work hand in hand with NJH?????
With Dr. McShane having gone to NIH I am again deciding who to have as my pulmonologist, either a new Tyler pulmonologist or NJH or local pulmonologist with Tyler or NJH. How has it worked for you? By the end of April I should have a good idea of what I will do.
When and if you have time to answer, thanks.
Barbara

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Replies to "Hi Kathy - I found out that the CVS Micropore Tape this year bothered me with..."

Hi Barbara,
I didn't know that Dr McShane was heading to NJH? To answer your questions:
Unfortunately, I did not maintain a relationship with NJH after my move to AZ. I wish I had. I had very mild BE when I left Denver and now moderate BE with M. Abscessus. It was so minor (tiny area), I never really considered my BE much of a problem until it was. I did not wear a mask before Covid and my NJH never suggested it back in 2012 (my last visit with my NJH doctor). I'm happy that it is now commonplace and more people are masking up, especially when they're sick. NJH doctor told me to stay away from construction sites and whenever I got sick to immediately get on antibiotics. Unfortunately, my first AZ Pulmonologist refused to write me prescriptions telling me I had viruses. She was wrong. And, in 2020 I built a house. So, I had a really good NJH doctor and now paying for not listening to him. Had I still been seeing him; I probably would be much better off now. I did find another pulmonologist here, but I always thought I had a virus and prolonged getting on antibiotics. Not understanding (trusting the doctor), a virus infection typically evolves to bacterial due to the BE.
I haven't ordered the mouth tape yet but still plan on it. I am doing good during the day and it's carrying over somewhat to overnight. I'm rarely waking up with a super dry mouth. Thank you for the update regarding 3M Nexcare.
I do like pasta and I have 1 every week to 1 every 2 weeks. For lunch, I eat sandwiches. The bread is a good whole grain, but still carbs. BTW, I think there is a link between low Vitamin D levels and BE. I have been on D3 for a few years now and keeping it at normal levels. I'm now back on C and Zinc now. Best, Kathy