Aspergillus after Bronchiectasis/MAC
History of brocniectasis/MAC diagnosis at NJH in December 2018. Had right lower portion of right lung removed June 2018 due to unidentified mass (mycobacteria). NJH stay of 10 days, went home with treatment plan of 2xdaily airway clearance. Slowly regained health and been doing fairly well until recently. November 2023 got sputum result of Aspergillus flavus. Johns Hopkins doctor ignored despite my repeated attempts for info. Finally responded, 2 mo. later that never treat till 2nd positive sputum….but did not order 2nd sputum. Sputum ordered by primary physician and result was Aspergillus Fumigatus. Found another pulmonary doc with MAC experience. He ordered 3rd sputum which recently came back Aspergillus Niger. No contact from physician and no treatment offered or discussed at all with me. I do have appointment next month. I am having symptoms similiar to when MAC first began. I am nearing 70 so not sure I even want treatment but would like information. What should I expect from physicians? On,y one who seems concerned is my primary care physician.
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Sorry to hear you’ve had such a hard time of it. Wish you luck with whatever your next decision is
I would encourage you to ask your primary care for an Infectious Disease Dr that he trusts. You might want to get a new Pulmonologist too . This is serious stuff and all need to stay on top of the present diagnosis. I am 68 and still feel that I have a lot of life to give and live. I have battling MAC, MAI, Pseudomonus, and a multitude of bacteria on a yearly basis since 2012. My Infectious Disease Dr and Pulmonologist are super on top of each diagnosis and encourage me to live my life and do everything I want to do. They help me when I travel with the meds that I might need as well as advice on what to do when I cross a mountain while I might struggle with breathing issues and such because of the altitude. I wish you luck. You just need a couple of new dr's in addition to your great primary care Dr that is concerned and is correct to feel that way.