How much mucus are you clearing with each nebulising/airways clearance

Posted by narelled23 @narelled23, May 7 9:34am

I have been diagnosed with Bronchiestases and more recently with MAC.

After coming across the Lung Matters protocol on Facebook 18 months ago, I have now given up the PPI (Nexium) and Spiriva and been following the Lung Matters protocol of nebulising with Salbutamol and then 7% hypertonic saline. The volume of mucus I extract each time is at least a cup, probably having increased as a result of having the MAC infection. Also, unlike others who have trouble obtaining sufficient for sputum tests, mine is very loose and prolific.

I am curious to know the volumes others produce and what you feel is the reason for this quantity.

I look forward to hearing from you.

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

@liz440

I just finished 5 yrs of allergy shots and no obvious improvement! Will get retested probably in a few months. There was blood work improvement - lower IGE scores etc. We had a horrible oak pollen season here this year because we never had a frost and my asthma was off the charts and I am not fully recovered yet. I can truly say at this point there is no guaranteed rhyme or reason to the mucus production. Some times I have what I call a "storm" which causes massive coughing mucus and nose blowing then it stops after about an hour. Other times it's all day long. Night thank God is quiet.

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Has your doctor mentioned a biologic yet? And have you tried singular? It helped my asthma a lot but gave me terrible body aches so I had to stop it (rare side effect). Spiriva dried up mucus way too much making airway clearance next to impossible. Now I take albuterol inhaler before clearance and symbicort twice a day. An allegra only before allergy shot, which is too drying to chest also. No easy answers.

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@scoop

Has your doctor mentioned a biologic yet? And have you tried singular? It helped my asthma a lot but gave me terrible body aches so I had to stop it (rare side effect). Spiriva dried up mucus way too much making airway clearance next to impossible. Now I take albuterol inhaler before clearance and symbicort twice a day. An allegra only before allergy shot, which is too drying to chest also. No easy answers.

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I can't take singular because I also have an autoimmune disease and Singular can cause Churg Straus Syndrome (sp?) which is a similar autoimmune disease. I am not going to take any biologics because I am afraid of them and they are in you for considerable time plus my recent blood work did not show high eosinophils or high IGE. When I am desperate 25 mg benedryl will help for about 4 hours and doesn't make me sleepy or dry things up too much. Zytec etc doesn't work at all. I use azelastine in my nose (also for allergy shots in the past ) every day but no idea if it helps or not but I kind of think it helps with post nasal drip. I use Breo once a day. Today was one of those quiet days and I feel less short of breath since I took a vacation from the sodium chloride. But who knows if that is a coincidence or not. Sorting this out has been and still is hopeless!

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@scoop

Such a good point about other airway diseases contributing to symptoms! It's a mystery to me how much asthma contributes to the mucus. I know COPD contributes from what I've read.

I'm taking allergy shots, 1st out of 5 years on maintenance. I also did shots in my 20s. Honestly, so far I don't notice a huge difference but was in my son's apartment with a cat and did not sneeze. Lately I've noticed wheezing after levalbuterol, which is weird. So I started using albuterol inhaler and not as much wheezing. I might be among few who cannot tolerate levalbuterol.

Changes in barometric pressure are a trigger for me too!

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I am never clear about what constitutes COPD. I thought that was an umbrella term for many airways diseases, and that Bronchiestases was simply one of them...which would mean we all have COPD. Are you saying that Bronchiestases is separate from COPD?

I do have asthma which I stopped taking meds for as they didn't seem to do anything and have apparent side effects.

Suggestions?

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@scoop

Has your doctor mentioned a biologic yet? And have you tried singular? It helped my asthma a lot but gave me terrible body aches so I had to stop it (rare side effect). Spiriva dried up mucus way too much making airway clearance next to impossible. Now I take albuterol inhaler before clearance and symbicort twice a day. An allegra only before allergy shot, which is too drying to chest also. No easy answers.

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Thank you so much. I probably need to try again to find a GP (Australia) who has more experience in airways disease. Difficult to find a good reliable person.

I am not sure to what degree asthma plays into my symptoms but the treatments I used to be on (Symbicort) didn't seem to do anything for my cough which was my principal complaint...and this seems to be connected to mucus. So I was often non compliant with Symbicort.

However since stopping the PPIs (very bad reflux and hiatus hernia) and Spiriva and taking on the LM protocol I am producing sooo much mucus. Have also been diagnosed with MAC recently. The mucus production is becoming worse still.

I have a specialist appointment this month so will see what they recommend. However i am concerned by using drugs with bad side effects.

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@liz440

I just finished 5 yrs of allergy shots and no obvious improvement! Will get retested probably in a few months. There was blood work improvement - lower IGE scores etc. We had a horrible oak pollen season here this year because we never had a frost and my asthma was off the charts and I am not fully recovered yet. I can truly say at this point there is no guaranteed rhyme or reason to the mucus production. Some times I have what I call a "storm" which causes massive coughing mucus and nose blowing then it stops after about an hour. Other times it's all day long. Night thank God is quiet.

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Thank you...it sounds difficult to track. I do hope you can fi d some relief.

My mucus production is constant and now with MAC even worse.

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@narelled23

I have just measured the cup I use and it is 7 oz. I produce this much at least twice a day. It is always light, foamy and white...with occasional heavier white aspects.

I don't recall being tested for Pseudo. It is only in the last 18 months since nebulising that I was in a position to measure it and have been producing that much for 6-9 months. Not sure how much beforehand. Never thought to mention it to anyone. I have only ever been asked once years ago and then I estimated a tabsp.

Thank you so much for answering my question. It seems so many don't produce much I am just learning.

Perhaps I should be tested for Pseudo too.

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Yes as Irene said "glad you posted this question".
I myself also have white, foamy, bubbly with Nebulizing. I have a good amount each time I nebulize and as well during the day. I have to stop every fiftth breath and clear it out into the Solo Cup I keep close by to place it in. I have shown it to at least three pulmonologists and they say they don't know what it is. I think I read, hopefully others may know if this is so, nebulizing brings moisture into the lungs. That doesn't seem right but an infectious disease doctor referred to what I showed him as moisture when I showed him it via the picture I took of the solo cup with the white, foamy, bubbly susbtance in it. I have a hiatal hernia and it is my understanding that we should follow the acid reflux diet etc. with a Hiatal Hernia. I believe it is the silent reflux they speak of. Acid relux can cause a back flow of substances and the constant clearing of the throat. It is so hard to tell what the real source is or if it is multiple problems....including drainage into the throat???? It is also worse after eating. I read on another forum a person speak of the constant 24/7 mucus and they had either acid reflux or the hiatal hernia. I was taken liquid guaifenesin until the other day when I read that it should not be taken with having GERD and probably therefore with a hiatal hernia. I am testing how I do without the guaifenesin along with doing my best efforts with airway clearance. As yet I have only been on the 7% saline solution without any doctor prescribed medications....I feel fine but I am beginning to have soreness at what appears to be the area just above my waist. Probably from trying to release all in my throat and airways and maybe not doing the huff coughing just right? For me I'm not the best at the huff coughing technique as yet. Hope we can keep this question going to see what those of us who have the white , foamy, bubbly and constant need of clearing of the throat have in common as medical problems. My definitive diagnosis is Bronchiectasis, Hiatal Hernia and a supposed small amount of MAI. No antibiotics prescribed as yet.

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@narelled23

Thank you so much. I probably need to try again to find a GP (Australia) who has more experience in airways disease. Difficult to find a good reliable person.

I am not sure to what degree asthma plays into my symptoms but the treatments I used to be on (Symbicort) didn't seem to do anything for my cough which was my principal complaint...and this seems to be connected to mucus. So I was often non compliant with Symbicort.

However since stopping the PPIs (very bad reflux and hiatus hernia) and Spiriva and taking on the LM protocol I am producing sooo much mucus. Have also been diagnosed with MAC recently. The mucus production is becoming worse still.

I have a specialist appointment this month so will see what they recommend. However i am concerned by using drugs with bad side effects.

Jump to this post

Regarding medications, it's basically a risk benefit calculation as all medications have risks. Perhaps you could take a short term (2-4 week) PPI to see if it makes a difference in your cough/sputum. People who can go off a PPI are those who eliminate all triggers and pay close attention to eating alkaline food. In other words, they eliminate acidic foods. I am not that person. That is some serious time and work to figure out. Plus I have a husband to feed!

COPD includes chronic bronchitis and emphysema. Bronchiectasis is not considered COPD, nor is asthma. My understanding is that one is considered to have COPD if the FEV₁ / FVC ratio is less than 70. Many people's spirometry changes throughout the year, sometimes improved sometimes worse, so take the ratio of 70 with a grain of salt and have a discussion with your doctor.

Do you know about the Bronchiectasis Toolkit? It was created in Australia! Maybe you could contact them for info on doctors who treat bronchiectasis and MAC. There's also NTM.org to check out.
https://bronchiectasis.com.au

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@blm1007blm1007

Yes as Irene said "glad you posted this question".
I myself also have white, foamy, bubbly with Nebulizing. I have a good amount each time I nebulize and as well during the day. I have to stop every fiftth breath and clear it out into the Solo Cup I keep close by to place it in. I have shown it to at least three pulmonologists and they say they don't know what it is. I think I read, hopefully others may know if this is so, nebulizing brings moisture into the lungs. That doesn't seem right but an infectious disease doctor referred to what I showed him as moisture when I showed him it via the picture I took of the solo cup with the white, foamy, bubbly susbtance in it. I have a hiatal hernia and it is my understanding that we should follow the acid reflux diet etc. with a Hiatal Hernia. I believe it is the silent reflux they speak of. Acid relux can cause a back flow of substances and the constant clearing of the throat. It is so hard to tell what the real source is or if it is multiple problems....including drainage into the throat???? It is also worse after eating. I read on another forum a person speak of the constant 24/7 mucus and they had either acid reflux or the hiatal hernia. I was taken liquid guaifenesin until the other day when I read that it should not be taken with having GERD and probably therefore with a hiatal hernia. I am testing how I do without the guaifenesin along with doing my best efforts with airway clearance. As yet I have only been on the 7% saline solution without any doctor prescribed medications....I feel fine but I am beginning to have soreness at what appears to be the area just above my waist. Probably from trying to release all in my throat and airways and maybe not doing the huff coughing just right? For me I'm not the best at the huff coughing technique as yet. Hope we can keep this question going to see what those of us who have the white , foamy, bubbly and constant need of clearing of the throat have in common as medical problems. My definitive diagnosis is Bronchiectasis, Hiatal Hernia and a supposed small amount of MAI. No antibiotics prescribed as yet.

Jump to this post

Is MAI essentially the same as MAC?

I am pleased that my question was relevant to others.

There seems to be some similarities in our conditions ie Bronchiestases with reflux and MAC.

I also was diagnosed many years back with asthma and have doctors reports indicating that my cough was dure to under treated asthma...however I didn't feel the Symbicort was doing anything for me.

So it is difficult to know and hard to find a general practitioner with experience. I have just made an appointment to see a GP who I went to some years back who had some experience with respiratory disease in a hospital setting (despite him having moved to a practice some distance away) to see if he can point me in the right direction.

However I also have 2 specialist appointments this month due yo my newly diagnosed MAC. Do I trust their advice? I guess I am going to have to...but I will definitely be bringing up the mucus issue with them.

REPLY
@scoop

Regarding medications, it's basically a risk benefit calculation as all medications have risks. Perhaps you could take a short term (2-4 week) PPI to see if it makes a difference in your cough/sputum. People who can go off a PPI are those who eliminate all triggers and pay close attention to eating alkaline food. In other words, they eliminate acidic foods. I am not that person. That is some serious time and work to figure out. Plus I have a husband to feed!

COPD includes chronic bronchitis and emphysema. Bronchiectasis is not considered COPD, nor is asthma. My understanding is that one is considered to have COPD if the FEV₁ / FVC ratio is less than 70. Many people's spirometry changes throughout the year, sometimes improved sometimes worse, so take the ratio of 70 with a grain of salt and have a discussion with your doctor.

Do you know about the Bronchiectasis Toolkit? It was created in Australia! Maybe you could contact them for info on doctors who treat bronchiectasis and MAC. There's also NTM.org to check out.
https://bronchiectasis.com.au

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Thank you...some helpful information there.

I have heard of the toolkit and would have looked at it some time ago. I am pretty proactive and since finding LM,
I guess I have pretty much relied on that till recently. Yes, I have heard of the NTM org and have joined the online NTM AUS NZ Facebook group.

Thank you so much for your response.

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@narelled23

I have just measured the cup I use and it is 7 oz. I produce this much at least twice a day. It is always light, foamy and white...with occasional heavier white aspects.

I don't recall being tested for Pseudo. It is only in the last 18 months since nebulising that I was in a position to measure it and have been producing that much for 6-9 months. Not sure how much beforehand. Never thought to mention it to anyone. I have only ever been asked once years ago and then I estimated a tabsp.

Thank you so much for answering my question. It seems so many don't produce much I am just learning.

Perhaps I should be tested for Pseudo too.

Jump to this post

The white foamy type might be due to something else and not Pseudo but would not hurt to test. I also have the white foamy but along with it plenty of brownish colored plugs. The brownish colored is typical of Pseudo, But the white foamy is not typical. I have read of one other person who mentions it as well. Internet mentions causes to be COPD or Heart or GERD. My pulmo just dismisses it as air getting in during the nebulizing process or some such thing. But I think he is just not sure. The other person who mentioned having this said her Dr was not sure of the cause either. With so much volume you might at least get your heart checked and or gastro Dr.

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