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.

@narelled23

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.

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What I do know for sure is that MAI and MAC are infections that may require antibiotics to try to eliminate them. I am not that well educated on exactly how they differ .

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@narelled23

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.

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You asked, "Is MAI essentially the same as MAC?" The short answer is yes.
MAI stands for "mycobacteria avium intracellulare" and MAC stands for "mycobacteria avium complex." Intracellulare is one variant of (I believe the most common) of the complex.
MAI is what this infection used to be called until improved technology led to differentiating between subspecies and the new name. That said, the way of treating each is similar - once the culture grows the bacteria, a "sensitivity test" is run to determine which antibiotics will be effective.

MAC is a rare infection, so it is usually outside the experience of general or family practitioners. In particular, they are unfamiliar with exactly when to watch and when to treat, and how to manage the rigorous 3 antibiotic treatment. Even pulmonologists rarely see it, so it is important to find one with experience, or to add an infectious disease doctor to your team.

We have a great group here who can help you learn all about MAC.
Sue

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@sueinmn

You asked, "Is MAI essentially the same as MAC?" The short answer is yes.
MAI stands for "mycobacteria avium intracellulare" and MAC stands for "mycobacteria avium complex." Intracellulare is one variant of (I believe the most common) of the complex.
MAI is what this infection used to be called until improved technology led to differentiating between subspecies and the new name. That said, the way of treating each is similar - once the culture grows the bacteria, a "sensitivity test" is run to determine which antibiotics will be effective.

MAC is a rare infection, so it is usually outside the experience of general or family practitioners. In particular, they are unfamiliar with exactly when to watch and when to treat, and how to manage the rigorous 3 antibiotic treatment. Even pulmonologists rarely see it, so it is important to find one with experience, or to add an infectious disease doctor to your team.

We have a great group here who can help you learn all about MAC.
Sue

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Thank you so much, Sue.

I am hoping that the specialist I am allocated to this month will be across it.

The copious amounts of white foamy sputum is intriguing and I am hopeful of finding a more definitive understanding of the cause in the hope of targeting treatment.

Am trying to address the reflux issue, complicated by hiatus hernia (I believe from coughing) because various people have indicated a connection.

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@sueinmn

You asked, "Is MAI essentially the same as MAC?" The short answer is yes.
MAI stands for "mycobacteria avium intracellulare" and MAC stands for "mycobacteria avium complex." Intracellulare is one variant of (I believe the most common) of the complex.
MAI is what this infection used to be called until improved technology led to differentiating between subspecies and the new name. That said, the way of treating each is similar - once the culture grows the bacteria, a "sensitivity test" is run to determine which antibiotics will be effective.

MAC is a rare infection, so it is usually outside the experience of general or family practitioners. In particular, they are unfamiliar with exactly when to watch and when to treat, and how to manage the rigorous 3 antibiotic treatment. Even pulmonologists rarely see it, so it is important to find one with experience, or to add an infectious disease doctor to your team.

We have a great group here who can help you learn all about MAC.
Sue

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Sue
Thank you for your post with the info...regarding MAI/MAC....."The short answer is yes."
Reading that my first thoughts: Wow, Sue has had to have spent much time researching and gathering information etc. etc. It is so helpful for so many.
Thanks to all who post for all to read and learn from.

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@irenea8

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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Thank you, Irene.

I am working on the assumption that it is the GERD which is causing me much discomfort. Am adjusting my diet to a point, and working on sleeping at elevation. However I am also thinking that, because I also have a hiatus hernia (despite last investigation they couldn't find it), I may have to seriously consider surgery for the GERD.

Does anyone have any suggestions regarding surgery options? I did read somewhere that they often don't work and also afterwards someone who couldn't vomit because of it...a bit ofca worry!

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@scoop

White foamy mucus makes me think of reflux/GERD. How are you doing off of the PPI? Many lung disease suffers have reflux/GERD. I understand the rationale of getting off these meds but often people with lung disease require them to keep irritating acid from getting into the lungs. Also, nebulizing albuterol tends to relax the lower esophageal sphincter. Using an albuterol inhaler 15 mins prior to saline has less impact on the sphincter.

Lung Matters Protocol are guidelines to follow with caution and consultation from your doctor. It's grown from the documentation of one woman's journey. Yet, one size does not fit all. Several of the links used as supported evidence are not relevant, some are dated. It seems there's no room for any debate. One very positive piece of advice there, however, is the importance of airway clearance. In this way, the site has done a huge service to bronchiectasis sufferers as airway clearance is the cornerstone of treatment.

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Thank you for your valued comments. I am not doing at all well with my reflux...thinking whether to go back on the Nexium to see how much better it is. However I will still be aspirating (if that is what I am doing hnow)...which is the argument against PPIs.

Curious if you have any feedback about the surgery for reflux with hiatus hernia?

Thank you for the Information about the salbutamol inhaler...I will try that.

Watching my diet for acid, but I do love the occasional pre dinner drink, coffee etc.

Thank you for your response.

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@narelled23

Thank you for your valued comments. I am not doing at all well with my reflux...thinking whether to go back on the Nexium to see how much better it is. However I will still be aspirating (if that is what I am doing hnow)...which is the argument against PPIs.

Curious if you have any feedback about the surgery for reflux with hiatus hernia?

Thank you for the Information about the salbutamol inhaler...I will try that.

Watching my diet for acid, but I do love the occasional pre dinner drink, coffee etc.

Thank you for your response.

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Sorry, I do not know anything about fundoplication surgery and hiatal hernia.

Regarding reflux, are you stopping all eating and drinking 3 hours before bed, and sleeping at an angle? Do you know what triggers you? For me it's onions and dark chocolate (very sad!) I believe the reason for PPIs in lung disease, especially ours, is that they cut down on acidic reflux. While we might still reflux it won't be harsh acid. With your doctor find the lowest dose possible. During a healthy streak try to wean yourself and see how you do. Weaning can take 2-3 months. I hope this is helpful!

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@scoop

Sorry, I do not know anything about fundoplication surgery and hiatal hernia.

Regarding reflux, are you stopping all eating and drinking 3 hours before bed, and sleeping at an angle? Do you know what triggers you? For me it's onions and dark chocolate (very sad!) I believe the reason for PPIs in lung disease, especially ours, is that they cut down on acidic reflux. While we might still reflux it won't be harsh acid. With your doctor find the lowest dose possible. During a healthy streak try to wean yourself and see how you do. Weaning can take 2-3 months. I hope this is helpful!

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I was taking Nexium years but went off it 18 months ago...mainly because of the perceived side effects of it and was hoping I could manage the reflux/hiatus hernia without PPIs.

However if this volume of mucus is due to going off Nexium then I may have to reconsider. Lots seem to trigger me, alcohol, coffee, tomato, chocolate, spicy foods. I do try to avoid these and sleep elevated, eat early...but I don't always succeed.

Thank you for your comments.

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@narelled23

I was taking Nexium years but went off it 18 months ago...mainly because of the perceived side effects of it and was hoping I could manage the reflux/hiatus hernia without PPIs.

However if this volume of mucus is due to going off Nexium then I may have to reconsider. Lots seem to trigger me, alcohol, coffee, tomato, chocolate, spicy foods. I do try to avoid these and sleep elevated, eat early...but I don't always succeed.

Thank you for your comments.

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Let us know what happens. If you go back on the Nexium and the mucus reduces significantly that would be good to know. Also there are "natural" remedies for reflux you could try but they probably are not as effective. And avoiding those foods you listed is really important.

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@irenea8

Let us know what happens. If you go back on the Nexium and the mucus reduces significantly that would be good to know. Also there are "natural" remedies for reflux you could try but they probably are not as effective. And avoiding those foods you listed is really important.

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I have lung function and specialist appointment later this month...I will wait until then, see what they say, but will keep you updated.

Thank you.

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