How it all began?

I developed BE as a child in the 1950's, growing up in West Texas in a home with 2 parents that were smokers. My BE was diagnosed after multiple bouts of pneumonia as a child. I underwent a broncoscopy that revealed 2 fungi growing in my lungs, coxiomytosis and histoplasmosis. These are both prevelant in the area where I grew up. I had a lower left lobotomy to remove a very diseased area of my lung. Since then I have had mild to moderate BE and now I am 74 and have had led an active lifestyle. I have occasional infections, but follow an airway clearance routine using my nebulizer, and do autogenic breathing. I also take Azithromycin 3 days a week.

I taught junior high for 21 years and high school for 9 years and retired after the 30 years in the year 2000. I very rarely was sick during my teaching years, sometimes teaching 100% of the time without absences for entire years.

I was fine for the next 21 years, no problems at all, but began coughing quite a bit in 2021, at age 77, went to a pulmonologist who thought I may have BE but the coughing came and went so we decided to wait for more symptoms before treatment. Fast forward to February 2023: sudden hemoptysis one evening (and many to follow to this date) and a bronchoscopy in early March 2023, which showed the BE and also MAC. Azithromycin, when the cultures came back, showed it ineffective for my types of MAC (fortuitum and chimaera) so there was a replacement antibiotic, Cipro. I was unable to tolerate the 3 antibiotics together. The bronchoscopy also showed I have two fungi infections: Trichosporon and Aspergillus.

Those are the reasons I became a patient at NJH in Denver and am about to finish all the testing done since last August and will know in March what treatment(s) I will need to help me. I turned 79 this past week and up to this point have mostly been using ACTs. I am unable to tolerate saline because it causes the hemoptysis I frequently have. I hope this helps others as they journey forth! We are all different!

Our stories mirror in some ways, but I am so happy for you being a patient at NJH and hopefully they will set you straight for quality of life. I was lucky to tolerate 2 of the 3 drugs for NTM, had IV intervention for 5 months for the 3rd, but stayed on the others for 18 months until April, 2018. I have felt pretty good for years after, even with the BE until I somehow contracted Pseudomonas a last summer. It's been a struggle because I cannot tolerate the oral drugs they wanted to give me but had IV Meropenen for 2 weeks and have been nebulizing Tobramycin once a month for a week ever since. Nebulizing causes a lot of problems regarding gagging and coughing, but I'm getting through those 8 days. I am also on Azrithomycin 3X a week which I seem to be tolerating.
I will be 81 in March and try to stay in good shape walking and some indoor exercise. I ended my teaching career in Middle School 6th grade Social Studies/English and loved it. Good for you for teaching Jr. High as well! We are special people and yes different, but it's comforting to be able to share the journey. Be well.

Mine was after an bronchial infection. I was on antibiotics and steroids for 2 years every 3 months until they did a bronchoscopy and found mac

I appreciate all of these interesting, informative comments. Several people mention pneumonia and several people also mention years of teaching and exposure to young children who often carry illnesses and share them. I guess it doesn't necessarily matter how we got it, except for future avoidance. Anyway, thank you all and keep taking care of yourselves. Stay as healthy as possible!

According to two pulmonologists, an infectious disease doc and my primary, there is almost never a pinpoint diagnosis of Bronchiectasis.
In my case, I had long term asthma and over-reactive airways, allergies, frequent bouts of bronchitis, ear and sinus infections throughout my life, as well as exposure to NTM as a lifelong gardener, and other bugs from being a hiker in desert and dusty conditions. Any or all could have led to Bronchiectasis. The ID doc even says "which came first, the chicken (Bronchiectasis) or the egg (NTM and Pseudomonas)?" Since that statement I have quit trying to figure it out as it really makes no difference.
Sue

Wow! I've often believed this! That would be so wonderful to do a study of teachers and MAC. I too was sick every winter and then some. Pneumonia, walking pneumonia, bronchitis, etc. I loved my schools, the students, parents, etc. but classrooms were literally rotting before us each day. The smell was incredible to someone who has a strong sense of smell. I now think I could almost smell the MAC, if I'd known what it was. I spent weekends sneaking over to clean and paint and coat things that weren't done by the custodians. We were not allowed to do this of course, but otherwise the children and myself lived in further poor conditions. Bless you for the work you did. Best to you.

Very helpful and it seems to be correct that it's not usually one specific event that causes this BE condition. My story is similar to yours in some ways in regard to overactive airways and bronchitis; also, strep throat twice. Then, in 2000 I think I was exposed to something in the soil weeding in my mother's yard. I pulled up a weed and a big puff of gray dust came up with it. Shortly afterward I felt totally exhausted and was sick for approx. a month, but the docs pretty much blew off the idea that it was from that dust. Several years ago I went on a trip and came back with walking pneumonia. That seemed to be the final straw that put things over the top. Thankfully, I am finding quite a bit of help from nebulizing and doing my yoga-like floor positions that seem to help a lot to clear the airways. It sounds as if you are pretty much ontop of your situation too. Thanks for the input. I really do appreciate this discussion/ support group!

I've read that 50% of NCFB (non cystic fibrosis bronchiectasis) is idiopathic, meaning no known cause. The other 50% is described in this table I collected awhile back.

I've always heard that mostly older women get this disease, but I see there are quite a few men who actually get it also. Sorry to hear you are on a good route now. When you say you are "Now treated for 5 years," does that mean you've been on medications that long?