How it all began?

Posted by zscline @zscline, Feb 23 4:38pm

I was told by the pulmonary specialist that my Bronchiectasis started with some sort of infection(s). It really did seem to fully show up following a bout with Walking Pneumonia.

Without getting too personal or getting into too much detail, I would appreciate hearing how this seemed to develop in others. Was it after an infection? Had you been having bronchial issues for some time leading up to this?

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Good open question. It will be interesting to hear others thoughts.
For Me:
Walking pneumonia 1960's Age: Early 20's.
Legionella/Mycoplasma Pneumonias both at same time 1980's. Age 45.
Possible bouts with IBS.
Living with forced air heating for 50 years.
Dehydration for several years before diagnosis with BE.
Sleeping on my back for almost ten years and waking up with dry mouth.
Symptoms of BE undiagnosed, for possibly seven years, until August of 2022 at age 80.

My hypothesis: Scaring there from the pneumonias, and the straw that finally did the full damage was/is the drying out of the airways (bronchi tubes) due to all the years of what forced air heating does, sleeping on my back and the drying out of not only the mouth..... but possibly..... also the airways.????

Could it be possible that it is different for different people........... or do we all have something in common that happened along the way in our lives.???

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In my case diagnosis of walking pneumonia after a month of coughing. An alert urgent care Dr referred me to a pulmonologist when he didn’t like what he saw on the follow up X-ray. BE diagnosis. Even though my doctors say the cause is idiopathic, it’s pretty darn clear to me and my husband. I was fifty at the time.

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I have been told there is no way to determine when or how I developed BE. I have not had pneumonia. I have always been very healthy. There should be a vast majority of people with BE when we think about all the common exposures we have all lived through.
Why don't all of my siblings have this?
I still am very healthy.
It is a conundrum.

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Symptom appeared 10 years ago, slowly progressed for 5 years then bad pneumonia and ER trip before seeing a pulminologist. Now treated for 5 years.

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I have no idea when it started. I do think that the third world conditions of a couple of the classrooms I worked in as a teacher contributed significantly to my lung conditions (bronchiectasis and MAC). Who knows. Seems it's anyone's best guess. I just wish there was a "fix" for all of us out there with Bronchiectasis and MAC and other lung diseases. Good luck with your journey. May you find a good and happy path!

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Hello, I had recurring bouts of pneumonia, including walking pneumonias in my 50's and 60's being a school teacher with little kids. I kept getting infected somehow. It wasn't until my 60's the BE diagnosis came up, but my doctor didn't seemed alarmed until in my 69th year I got MAC/NTM. I never heard one thing about airway clearance etc. until recently. Too bad. (My doctor did refer me and want me to go to National Jewish but it wasn't feasible for me at that time. I regret it.) Now 10 years later I developed pseudomonas aeruginosa in my lungs (last summer) and I'm back in recovery mode again. All from multiple pneumonias in my opinion. Take care of those lungs and good luck. Hang in there.

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@pawster

I have no idea when it started. I do think that the third world conditions of a couple of the classrooms I worked in as a teacher contributed significantly to my lung conditions (bronchiectasis and MAC). Who knows. Seems it's anyone's best guess. I just wish there was a "fix" for all of us out there with Bronchiectasis and MAC and other lung diseases. Good luck with your journey. May you find a good and happy path!

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HI Pawster. Same here working in tough situations teaching elementary school for 32 years. I was sick every winter for sure. I also wonder what's going on in our environment that so many seem to have many different kinds of lung issues and more. You also wonder if anyone is doing any studies on BE and MAC in regards to professions/environments people are working.

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My BE developed after a long bout with ulcerative colitis and irritable bowel syndrome which resulted in surgical removal of my entire colon. The surgery cut out the disease but a year or two year after the surgery, I developed a terrible cough. Drs could not figure out what it was. And, after about 10+ years of extreme constant coughing, I was finally diagnosed with bronchiectasis. Research shows a link between pulmonary issues and ulcerative colitis. I never had any lung issues prior to the surgery. And, interestingly enough, an acupuncturist also told me that the lungs are the sister organ to the colon. So, I do think it is entirely feasible that my BE began with the colitis.

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My pulmonologist said that my bronchiectasis cause is unknown. He also said that it could have begun 10 years ago gradually??? I guess I'll never know.

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I am still surprised I have BE. I've always been healthy and never had a bronchitis or pneumonia that I remember. I have Respiratory Reflux however and I attribute my BE to that. It took at least three years to diagnose the reflux as we first thought it was allergies. I try to manage the reflux with diet and lifestyle changes like sleeping elevated, etc, but it's still a struggle. I've been diagnosed with Asbecessus and Pseudomonas. However my most recent bronchoscopy cultures have been negative for Pseudomonas and the ACF cultures are still pending.

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