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How often should I be tested for MAC
MAC & Bronchiectasis | Last Active: 8 hours ago | Replies (21)Comment receiving replies
@cholash Are you saying NJH did not find you to have a MAC infection? Maybe you did not have one at the time, that is possible. You did have Bronchiectasis, am I interpreting it correctly form your post, when you went to NJH but maybe you didn't have the infection then with the Bronchiectasis??? Or, I wonder, if it could have been so very low it wasn't detected???
I take it NJH did not suggest you send in sputum every so often after your initial visit???
What sent me to NJH was my BE and it was there that I found out I had a MAC infection, MAI.
I felt well then and I feel well now, yet I had and have an infection. It is at a low load, as yours, so far and I am not, have not taken the antibiotics.
Yes, hard to understand that we could have the infection and feel O.K. However, it could be that it is at low loads and we still feel O.K.?? It probably also depends on how strong our immune system is as to why we feel O.K.???
Barbara
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@blm1007blm1007 My time at NJH gets very mixed reviews . ( sorry for the long explanation, complicated ) BTW I’m 64.
I was sent to NJH due to continuous lung infections . Antibiotics& steroids , a few weeks of improvement , then the symptoms world sky rocket again , repeat . I was hopping around specialists , looking for answers for around 1 1/2 yrs. I was house bound . My last pulmonologist referred me to NJH. I was there over 1 week , tested for everything . Nothing was coming up. The very last day during an endoscopy , the GI doctor found an Inlet Patch in my upper esophagus . An Inlet Patch is an area of gastric tissue - should be in your stomach , not high up in your esophagus . Due to the location , whenever I would eat , acids were coming from the Inlet Patch into my airways . The GI Dr & the pulmonologist overseeing my team of doctors were thrilled to discover this finding , believing if I had it removed , my symptoms would dramatically improve. They also informed me damage had been done from all the infections and it would leave me with a permanent lung disease . . Regardless of the lung disease diagnosis , I left NJH with all the excitement of this Inlet Patch discovery . When home, I had the Inlet patch removed & it was life changing . My chronic infections were gone .
2 years ago ( about 4 yrs after NJH) , I had a pneumonia follow up chest CT and saw that it noted Bronchiectasis . I had never heard of this before , so I started looking at all of my prior CT’s. When I first started having the initial inlet patch infections , the chest CT did not show BE. However , every CT after that first one , including the NJH CT, all indicated mild BE in the findings .
I looked back at my all of my paper work from NJH ( you know how you come home with a book) and I found the letter from the lead NJH doctor to my local pulmonologist . The NJH Dr stated amongst other things , the Inlet Patch finding, BE noted in my NJH CT , and no NTMs found from bronchoscopy testing.
*****Here’s the kicker - no time at NJH did anyone ever mention Bronchiectasis to me or my husband . When I came home , my local pulmonologist never used that diagnosis . She always just said I have “ small airway disease “.
So I went for several years not even knowing I had BE! I didn’t even know what it was!
I don’t know what to make of this with NJH…how they didn’t discuss BE with me. The only thing I can determine is we were all getting very frustrated to keep hitting walls with no answers from all the testing . They had me stay an extra 2 days , and it was that last morning the inlet patch was found . I think at that point the inlet patch became the big focus . Maybe they thought I already knew I had BE..? Idk. I met with that NJH pulmonologist after the scope , she gave her recommendations on the inlet patch removal , and we headed to the airport . It was a fast day.
On a side note , I asked my pulmonologist 2 yrs ago after seeing the BE CT finding , and she basically indicated she knew I had it but was using other wording to describe Bronchiectasis to me .
Long answer , but it’s all been very complicated . The entire thing honestly angers me .
NJH & my local pulmonologist all knew I had BE, yet I didn’t .
However , I will be eternally thankful to NJH for turning all the stones & finding the Inlet Patch .