Pulmonary 🫁 mac disease

@lorifin777 When you ask about "cmt1x" are you referring to Charcot-Marie-Tooth Neuropathy?

If so, here is a very clear explanation of how lungs are affected by the disease:
https://www.cmtausa.org/living-with-cmt/managing-cmt/breathing-and-cmt/
As far as I can tell, pulmonary MAC is not a common effect of this disorder, but anything that limits our ability to fill and empty our lungs does add infection risk.

Do you also have a diagnosis of Bronchiectasis or another lung disease? Has the doctor ordered sputum samples to see if the bacteria is cleared?

Is there anyone that has gone to national Jewish health in Denver

My visit to NJH in Denver was 10/2023. I am glad I made the appointment and as well glad I had all the tests they have you do. The tests either rule out or confirm other problems that could be adding to or causing greater complications with BE. For me all went smoothly before going and while there. As with all medical, and almost all things today, it helped that I took an active roll by staying on top of all via phone calls to have my questions answered and confirmation of matters I felt I needed to confirm. I stayed at the Marriot Residence Inn in the Cherry Creek area which is close to almost everything including NJH and Whole Foods Market.
Barbara

Sue.....More good information and explanations. All I can say is.....WOW, you must have a huge folder filled with many good informational websites to pass on to us and help us all with our questions and concerns. Didn't you have medical tests for September. Hope you had/have good results.
Barbara

Thanks for the compliment Barbara - I have (virtual) folders full of bookmarks. Every once in a while, I go through and reorganize them to make things easier to find and to replace old info. Hmm, I might just do that during the football game today.

Yes, I do have an appointment - my sputum cultures were rejected, so I will produce one tomorrow with help of the RT when I see my pulmonologist. There won't be a problem this time - I am the tail end of a Covid infection with a productive cough.

Oh my....are you saying you had Covid in the last month. Has Covid visited you more than once.? Do you think it happened at the Fair???
So far, a one time experience for me with Covid. I believe I contracted in February of this year when it was suggested by a nurse practitioner I go to Pulmonary Rehab. It was like a fitness center and only two of us were wearing a mask. None of the PT's were wearing a mask or had to wear masks. I felt nervous about masks not being used and all that expelling of breaths from others as they walked the treadmill etc., on the three days I went. It wasn't very crowded but, no masks! People are there due to lung problems, so why no masks I thought. By the morning after the third visit.....pain all day and ER that night. Left the ER with Paxlovid prescription for Covid. The Pulmonary Rehab was the only thing I can say I did differently since our being informed originally of Covid. I had been so careful, masking everywhere outside the house. So who knows for sure but so disappointed that I had contracted Covid. I also consider it my fault. I should have walked out and not stayed with my being uncomfortable with a no mask required environment where there were several people. I didn't listen to my "gut" feeling of 'this isn't good, no masks."
Yes, when I go to Tyler I have had a RT (she is great) help me with preparing a sputum sample, it does help. Approximately 12 sputum samples submitted, all accepted except the first one done with the PT, she forgot to label the vile. Again, somewhat my fault, I should have asked, helped, by asking "did we label the vile." Thank goodness I have not been told ' time for antibiotics.' Lucky me.
Barbara

I had it this week - not from the fair though. We went to an outdoor concert last Friday and sat near the same group of people for several hours - seems we both caught it there.
We dodged it for 4 1/2 years - through all out kids and grandkids having it multiple times, trips to clinics & the ER & travel - where we have generally masked in clinics, planes, shuttles, etc. Never even thought we would get it outdoors!
My husband is on day 5 of Paxlovid, but I cannot take it due to one of my meds. So I am nebbing and coughing but generally feeling better.

Well, I got my lung folder and one other reorganized started while I watched the ballgame.

Thank you Sue.....you just confirmed the decsion I made after all of us had been living with Covid for a while.... back in 2020-2021. I believed that we were not safe from Covid outdoors with good size crowds, especially all being close to one another like in a concert, football game etc........ and yes even outdoors. That's still a lot of breaths breathing around us. So I have not allowed myself to be in that type of environment. (Big mistake I made going to that Pulmonary Rehab Facility at Mercy Hospital with maybe 10 people there each time I went, and the policy of no masks needed.) So my life for multiple reasons has boundries now that I did not have in my pre Covid, pre BE, pre hiatal hernia days in which I felt free to do almost anything. Thank goodness I'm O.K. for the most part in my having to say to myself "been there done that." Just have to find other ways to enjoy life and people.
You did well Ms. Multi Tasker......lung folder etc. reorganized. Now if I could only Multi Task....never was good at that.
Barbara

Since 2021 we've been to many outdoor events including concerts without a problem, but this one was over 6 hours and the seats quite close. We would mask next time, just as we do at the indoor events we go to.
After 4 plus years, I can't imagine living the rest of my life fearing Covid or the "next thing" and missing out on the life we love. So masks it will be. And vaccines, handwashing...

Thanks Sue. Good to know about all your experiences and when you do and don't mask and what has or has not transpired if masked or not masked. I am probably somewhat overcautious as yet. So much to learn as yet for me. Again Thanks
Barbara