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MAC patients: Did you take probiotics during your treatment?
MAC & Bronchiectasis | Last Active: Dec 10 9:18pm | Replies (37)Comment receiving replies
Yes, I was told while at NJH that there have been some people that didn't know that they were a Cystic Fibrosis carrier until having gone through the NJH testing they suggest for a patients due to their symptoms etc. I'm sure many patients are surprised with what NJH does test for and what they, the patients, were told afterwards in hearing the results. For me it was confirmation that I had MAI and what it was called that was happening in the lungs. I am two years into having been told 'you have BE.' after the local PCP doctor ordered the CScan.
I am now 82 and the thought of what one has to do for ourselves going forward for me causes me to question, "how will I manage all this should I live into my 90's?" Meaning all the things we in general have to do for ourselves, (I'm single no family etc. and as we know this is common today for many) and then BE and a body that is taking on other problems with age. Oh well, I shall figure it out.
If I understand correctly you were not put on Antibiotics at 66 and this is your first go round???
Barbara
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Barbara, I had a routine chest x-ray at age 65 that showed nodules. I was then referred to a pulmonologist who suspected MAC, and since I wasn't symptomatic, we simply monitored for a while. After I had done some research, I mentioned that CF ran in my family. He then did a bronchoscopy and tested for CF. I was positive for MAC and was a gene carrier. My nodules pretty much came and went for a few years. Last year my Husband of 50 years passed, and I was told one of my nodules had gotten larger and I was referred to an Infectious Disease MD. He suggested the NJH study. I had more testing and a CT scan, which also showed my breast implants from a previous bi-lateral mastectomy, had ruptured. Good news is I was able to schedule the surgery until after my trips. I am now recovering from that surgery (5 days ago). Thankful for my friends and neighbors!!! I have been trying my best to live my life but still be cognizant of my MAC. It can be somewhat challenging but doable. I have traveled quite a bit this year: Boston cruise to Canada; Train from Quebec to Montreal and bus to Niagara Falls; Denver (Santana concert at Red Rocks; Wisconsin and Guatemala. Hope to start planning my next trip soon! Hang in there!! A can do and positive attitude helps! My Mom is still alive at 93 and most of my relatives lived a long life! Oldest was 104! We have a lot to do yet!