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How to stay healthy with Bronchiectasis

MAC & Bronchiectasis | Last Active: Jan 6, 2020 | Replies (30)

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@sueinmn

@janeb Hi Jane - If you have been living with bronchiectasis successfully for 2 years with few flareups and no further damage from the MAI, I would say keep doing what you are doing now.
If you are feeling worsening lung symptoms, like cough, shortness of breath, fever, fatigue or recent weight loss, it might be time for another doctor visit.
I am curious about the "flare ups" - what symptoms do you have that make you seek care? What diagnostics are perfomed before meds are prescribed?
Sue

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Replies to "@janeb Hi Jane - If you have been living with bronchiectasis successfully for 2 years with..."

My coughing increases, I notice an increase in phlegm (I use a flutter valve nightly) and I experience a general loss of energy and shortness of breath.

Hi Jane & Sue, It's interesting to learn how others experience this illness; how we encode it in our language. During the relatively brief period that I've been visiting this discussion forum I've had confirmed my existing belief that I am lucky to have a relatively mild case of Bronc. It was approximately 10 years ago when inexplicably I began to have frequent (usually once or twice daily) very mucous productive coughing episodes. In those "early days" I was able to trigger an episode simply by sitting in a recliner in a semi-recumbent posture. In addition, I experienced frequent spontaneous such episodes sufficiently unpredictably and mucous productive that I began to carry a toilet roll in the car to deal with mucous production.

My primary doc referred me to a pulmo who performed a bronchoscopy fully expecting to confirm MAC. To his consternation that didn't happen. In the meantime primary doc Rx'd Cipro which resolved a febrile "flare up." The pulmo wanted to investigate further with a CT scan. Primary and I decided that he would simply manage flare ups with antibiotic tx. I rocked along for probably a couple of years on that regimen with the flares occurring aprox. 2 x year. My primary closed his practice and a new primary referred me to another pulmo who followed me for a year or so during which time he ordered a Respirtech Percussion Airway Clearance device (aka, my Thumper).
Amazingly Medicare picked up the entire cost of the thing which I now own outright. I have be very compliant with a 2 x daily half-hour sessions accompanied by saline inhalation Tx.

Over time I began to describe Bronchiecstasis as a chronic lung disorder which resulted in greater vulnerability to acute bronchitis episodes. At that time I didn't particularly think of those episode sas Bronchiecstasis "flare-up" but rather as acute bronchitis episodes to which I was more vulnerable by dint of the underlying Bronchiecstasis disorder. BTW, the bronchitis episodes were always accompanied by fever. Even a low grade fever makes me feel lousy, really "sick." These occurred almost like clockwork twice each year. Eventually, my doc(s) agreed for me to have a few tabs of whatever antibiotic I was using on hand at home so that I could start on the medicine at first sign of fever. BTW, I did eventually test positive for MAC.

I've always felt that a good measure of overall improvement is simply the frequency of flare-up occurances. Regrettably, so far I've never been able to reduce below 2 x annually. Next week I increase from 0.09 to a 7% saline inhalation. I'm hoping I tolerate it and also hope for a good therapeutic response.

Well, this is a long and kinda rambling post, but I'm struck by how I think about this problem has evolved and how it compares to others' experiences. In health, Don (Thumper Guy)