How to stay healthy with Bronchiectasis

@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

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)

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)

Hello Thumperguy, Do I understand you to say you have never had a chest CT scan? How was your Bronchiectasis diagnosed then? I started a productive cough over 3 years ago that was often precipitated by leaning back in a recliner just as you described or just simply lying flat on my back. After a multitude of tests over that 3 year period I finally had a CT scan where they found mild Bronchiectasis and other lesions suspicious for MAC. A Bronchoscopy and culture confirmed MAC (actually MAI Mycobaterium intracellulare) in Sept 2018. I have been on the big 3 (Azithromycin, Ethambutol, Rifampin) drug therapy since. I started showing improvement soon after starting the meds, but I still will cough up small amounts of sputum almost daily. My plan is to take medication for up to 18 months. I have never had any symptoms besides the cough so I guess I am lucky there. I often wonder which came first the MAC or the Bronchiectasis.

Hello Thumperguy, Do I understand you to say you have never had a chest CT scan? How was your Bronchiectasis diagnosed then? I started a productive cough over 3 years ago that was often precipitated by leaning back in a recliner just as you described or just simply lying flat on my back. After a multitude of tests over that 3 year period I finally had a CT scan where they found mild Bronchiectasis and other lesions suspicious for MAC. A Bronchoscopy and culture confirmed MAC (actually MAI Mycobaterium intracellulare) in Sept 2018. I have been on the big 3 (Azithromycin, Ethambutol, Rifampin) drug therapy since. I started showing improvement soon after starting the meds, but I still will cough up small amounts of sputum almost daily. My plan is to take medication for up to 18 months. I have never had any symptoms besides the cough so I guess I am lucky there. I often wonder which came first the MAC or the Bronchiectasis.

I joined this group but never know where to go to start a conversation so I'll sneak in here.
I have Bronchiectasis an I am on azithromyacin now because of a cold with cough. Getting better but very tired an weak. I'd like to know the other signs of bronchiectasis that happen. Right now I always have cough with phlehm. Should I take precautions like wearing a mask if I'm around people that are sick with colds etc.
If someone thinks I'm in the wrong place than tell me where I should be.
Thanks, Bomar

@thumperguy Hi Don. Since you mentioned prescriptions of Cipro, I wanted to let you know that Cipro is one on the antibiotics that can weaken tendons and patients can rupture the Achilles tendon easily just by doing normal activities. Other risk factors are being over 60, etc. My husband who is over 60 ruptured his Achilles tendon for no apparent reason even though he didn't take Cipro, and we are waiting to see if it has improved or if he will need surgery. It may have been his use of an elliptical exercise machine and he didn't fall or overexert himself. I just wanted to mention this, and it is worth asking about risks and side effects of medicine and how that may affect your health status now or in the future. Pharmacists can help find this information. Here is a link to some literature about this. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921747/

@thumperguy Hi Don. Since you mentioned prescriptions of Cipro, I wanted to let you know that Cipro is one on the antibiotics that can weaken tendons and patients can rupture the Achilles tendon easily just by doing normal activities. Other risk factors are being over 60, etc. My husband who is over 60 ruptured his Achilles tendon for no apparent reason even though he didn't take Cipro, and we are waiting to see if it has improved or if he will need surgery. It may have been his use of an elliptical exercise machine and he didn't fall or overexert himself. I just wanted to mention this, and it is worth asking about risks and side effects of medicine and how that may affect your health status now or in the future. Pharmacists can help find this information. Here is a link to some literature about this. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921747/

Hello Thumperguy, Do I understand you to say you have never had a chest CT scan? How was your Bronchiectasis diagnosed then? I started a productive cough over 3 years ago that was often precipitated by leaning back in a recliner just as you described or just simply lying flat on my back. After a multitude of tests over that 3 year period I finally had a CT scan where they found mild Bronchiectasis and other lesions suspicious for MAC. A Bronchoscopy and culture confirmed MAC (actually MAI Mycobaterium intracellulare) in Sept 2018. I have been on the big 3 (Azithromycin, Ethambutol, Rifampin) drug therapy since. I started showing improvement soon after starting the meds, but I still will cough up small amounts of sputum almost daily. My plan is to take medication for up to 18 months. I have never had any symptoms besides the cough so I guess I am lucky there. I often wonder which came first the MAC or the Bronchiectasis.