Pulmonary 🫁 mac disease

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

My husband and I are staying at an extended stay just 7 miles away. Did they help you

Yes, in that my local doctor here did not error on the side of caution in many ways and nothing was being done for me compared to what they did for me at NJH. They ordered sputum tests (my local pulmonologist doctor had not done that nor did he order a CScan when it would have been best to do (error on the side of caution) after the previous test that showed large lungs (apparently inflamed lungs). The local pulmonologist was not concerned with the size of my lungs. It was my PCP doctor who finally ordered the CScan after the large lung xray and my having lost weight. NJH had me start nebulizing the 7% saline, ordered the oscillating vest for me to have via medicare plus they had me scheduled for all the other tests that were good to have and know about my health. I realized once all was completed at NJH it would have probably taken months and months locally to have all those tests that I agreed to have that they suggested and arranged for me to have at NJH in the short stay. I am glad I went.
Barbara

My doctors here in Vegas are on top of things. I have ct scans every 6 months. Was on antibiotics for two years. Sputum tests showed non resistance to azthromycin. This is my infectious disease dr. My pulmonologist ordered vest, nebulizer and aerobika . They can’t do any more for me here. Do you have Mac I have Mac and bronchectisis

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

Hi Sue and Barbara,
I took advantage of Pulmonary Rehab in the fall of 2023 to March, 2024. The center required all clients and staff to wear masks at all times (except drinking water). I suspect it might be standard practice here in NYC.
Onward and forward,
Flo@Frankie160

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

How do the RT help get sputum sample? I was given a container to place sputum in and drop off to lab but ai cannot produce any.

I have MAI/MAC and Bronchiectasis. Apparently all is not bad enough to begin antibiotics as told to me by NJH pulmonologist and further not told to me by the BE doctor in Tyler, Tx. In addition to not being enough bacteria and also moderate mucus plugging I feel well, appetite good, gaining some weight, and sleep well. NJH philosophy is most often, depending upon all factors and the patient's overall picture, appears to be 'watchful wait and see" approach. I was/am happy with that for me, so far. Did you receive the packet and information from NJH about the type of tests NJH that will or might be scheduling for you or could be decided to be schedule for you. That might help you to have a better understanding in determining your decison to go to NJH. If you don't have them, the explanations of the type of tests, call your scheduled representative assigned to you and ask for it to be sent to you. You are fortunate to have the doctors you have there in Vegas who apparently did more for you than my local pulmonologist. However, your MAC and BE may have been further advanced than mine at the time I became involved with my local pulmonologist. Not having any concrete answers etc. from my pulmonologist and not understanding all about BE and knowing of NJH.....I took it upon myself to go beyond the local pulmonologist by going to NJH. No local doctor here recommended NJH to me however when I mentioned to them that I made an appointment there they all knew of it and praised it.
Barbara