How to stay healthy with Bronchiectasis

Posted by janeb @janeb, Dec 17, 2019

Dear Friends,
I was diagnosed with the big B four years ago. I have been very fortunate and have what my Pulmanologis calls "flare ups" only occasionally...a week of antibotics puts things back in order. I am not sure what brings the flare ups on. Our home is hepa filtered throughout and when the forest fires come in the late summer I stay inside. I'm wondering whether you all use care to avoid certain environments or circumstances. Can you give me some advise regarding what to avoid? Thank you all in advance for any thoughtful advise.
Jane

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Thanks Colleen.
My wife is Dentist and this might be the reason for the re infection, might be also because of the cavity in the upper lobe. Her plumonogist had just re-started the 3 antibiotics and a puff of cortizon 2 times per day. In the mealtime, he will form a team of an infection disease specialist and a surgeon to study the case after 2 months and then decide the best action to be taken. My concern is where to do the surgery in case we need to? Would appreciate some thoughts if anyone of the member done the surgery. Many thanks again and god bless you all

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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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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)

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@thumperguy

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)

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@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/

REPLY
@thumperguy

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)

Jump to this post

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.

REPLY
@poodledoc

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.

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Having bronchiectasis makes you susceptible to MAC and other pathogens. So I would think the MAC came second.

REPLY
@poodledoc

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.

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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

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@bomar

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

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Hi @bomar,
Here's how to start a new discussion
1. Go to the MAC & Bronchiectasis group homepage https://connect.mayoclinic.org/group/mac-bronchiectasis/
a) Scroll through the discussion to see if there a discussion already exists on the topic you wish to discussion. If yes, post a reply there.
b) If no, proceed to step 2
2. Click START A DISCUSSION
3. Enter a title. Be specific, for example: "How do you deal with the emotional toll of IVF?" or something in your own words.
4. Write your message.
5. Click CREATE DISCUSSION.

Here are more instructions on how to use Connect
– How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/

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@jenniferhunter

@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/

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Didn't know that about Cipro. Thanks for the tip. Maybe my doc learned that early in the game because, without explanation, he changed to a different antibio along the way; and back then I was too naive and trusting to ask why.

REPLY
@jenniferhunter

@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/

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@jenniferhunter @thumperguy wanted to jump in this conversation and report that I had a severe reaction taking the flouroquoin Levofloxacin (Levaquin) to address Pseudonomas. I didn't heed the black box warning because all of my meds have scary warnings. (I'm on the "Big 3" and now, Aricayce)
After taking the Levofloxacin for 28 days I just had to read up more and that's when I "saw" the warning. I immediately called my doc and stopped that medication. It took months for my ankles (mostly) and areas around my shoulders, knees and elbows to calm down. I actually wore ankle supports the pain was that great.
One last piece of info. Apparently I was primed to have a contraindiction as I suffer from osteoarthritis, osteoporosis and DDD. Black box says "warning" if you have musculoskeletal issues. Plus I just hit 60. Of course medicine affects us all differently.
Margie

REPLY
@poodledoc

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.

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poodledoc, My intro to Bronchiecstasis involves an admirable piece of behavior from an oncologist. At the time I was having periodic visits following successful chemo/radiation tx. for an early stage adenocarcinoma. My oncologist was on vacation; his practice being followed by a senior physician he knew. One of my periodic visits occurred during the period the "stand-in" doc was "on duty." It was very routine. I did however mention to him that I'd been experiencing more frequent coughing spells. However, later in the day I received a phone call from the doc. He explained that while making a note in my chart he happened to notice a radiologist's report from an earlier CT chest scan. The radiologist had noted an area in one lung in which the tissue reflected a "thickening." The oncologist went on to tell me that the finding could be associated with a lung condition called bronchiecstasis; he even spelled it for me. He also suggested I follow-up with my PCP.
I did that which led to a pulmo referral and a bronchoscopy. He was looking for MAC and was puzzled when I was negative at that point. He didn't make much of bronchiecstasis, in fact, I can't remember him mentioning it.
The ensuing period the duration of which I'm unsure at this point was characterized by semi-annual flare-ups of febrile acute bronchitis (at least that's how I characterized them, a practice with which my doc offered no objections or correction). I eventually ended up going to a different pulmo whom i really liked. During that period I did have a CT scan and also came up positive for MAC on a sputum culture.

More recently, with yet another pulmo due to the "really-liked" one moving away, I had another CT scan and was surprised to learn that the MAC had actually improved (it was only after I found this forum that I learned that MAC does occasionally spontaneously(or perhaps in response to tx.) improve.

So yes poodledoc, I have had CT scans though I imagine antibiotic tx. began simply based on the clinical judgment of my PCP. I've always felt that the way the "stand-in" doc handled me is admirable. In a way remarkable in that his focus was my condition in relation to cancer treatment and could justifiably be limited to that. However he didn't look at it that way, but rather went to the trouble to notify me about an "off-topic" issue which, going forward, has proven to be a much bigger issue than the adenocarcinoma.

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