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DiscussionAdvice for recently diagnosed with MAI
MAC & Bronchiectasis | Last Active: 3 days ago | Replies (7)Comment receiving replies
Replies to "Thank you for your response Sue. My pulmonologist had me do a sputum test, a blood..."
Once I was diagnosed with BE, Bronchiectasis, the local pulmonologist told me I should buy an Acapella. He gave me an instructional flyer on how to use it that appeared to be a instructional flyer that the pulmonology dept. gives out. Therefore I had no direct instruction from him or instruction from a tech in the department and then when I bought it the paperwork from the manufacturer specifically indicated your doctor will instruct you and tell you what setting to use. Did not happen.
He also said to see him in 6 months. I went to him for a year and not once did he do or show me how to give a good sputum for testing for a possible infection. I was brining up sputum constantly and he observed that each time I had an office visit with him because I constantly carried a cup that I removed the sputum in when clearing my throat. However as of that time, and presently, I have not had a uncontrollable coughing spell/exacerbation.
After a year with the local pulmonologist who was lacking in directions to me, I went up to NJH when I realized I needed their expertise and direction that they give. That is when I found out I had MAI. I was told the antibiotics were not being prescribed at that time because my MAI was low. It was a 'wait and see, watchful waiting'" approach.
At the time at NJH and presently, 1 and a half years after NJH, my MAI load continues to be low and I have not started the antibiotics, my choice at this time.
I am fortunate that overall I feel well, no fatigue etc. at 82 and 5 months of life. I may have a small hiatal hernia, that is the only other possible health problem I have at this time. NJH indicated small hiatal hernia however I have no typical symptoms for it.
Yes, I also had pneumonia, two types at the same time in the 1980's.
With BE, Bronchiectasis and MAC/MAI I believe it helps us to find our way to loosen the mucus and make it "juicy", as one person on Mayo put it, to help remove the mucus (nebulizing etc.) and finding our way also to all the methods of airway clearance that are discussed on the internet and on this Mayo site.
I have found that it definitely is best to do the therapy two times at day morning and afternoon.
I also had to assume that my blood work was fine due to the BE specialist I began seeing in Texas did not discuss it with me after the test results came back. I had to specifically, on my follow up visit three months later, bring up the subject of the blood work. I did need clarification due to the results and my concerns with what I saw being said....low in some areas, high in over areas and what I read about the results on the internet at reliable sources.
So glad you found your way to this site and so many of us have after learning the news we never wanted.
Barbara