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Have you decreased Airway Clearance from 2 down to 1 a day?

Posted by pjas972j @pjas972j, Apr 9 6:00pm

I have had Bronchiectasis and mucoid pseudomonas for 15 years. After multiple PICC lines, I learned about ACTs 5 years ago from NJH, where I went when MAC was found after a bronchoscopy. I apparently cleared the MAC. NJH put me on inhaled Tobramycin for 18 months then switched me to Colistin because of Toby’s side effects. I have not had any exacerbations for almost three years.
I started Brinsupri in November 2025. At my follow up with Dr. Griffith at NJH, my CT scan was stable, my lungs are less inflamed, and my bloodwork shows less inflammation. All good news.
I have been feeling the burden of all the nebulizing, self- care, restrictions, etc. that is common to us all. I surprised myself when I started crying as I explained how 5 years of twice a day airway clearance has worn me out.
Dr. Griffith said that chronic illness burden is real. He suggested that I go down to once a day doing my airway clearance routine. He said I am stable enough and the Brinsupri should help me stay that way.
I’m excited to think I can nebulize in the morning and not have to schedule my day around a second session. So, why do I feel scared? I’m nervous that once a day won’t keep me healthy and I don’t want to go back to being as sick as I was when all this started. I know I can always add in a nebbing session if I feel something coming on. Have any or you faced this? What tips can you give me for going down to once a day?
Many thanks!!

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narelled23 | @narelled23 | Apr 27 6:44am
In reply to @blm1007blm1007 "@narelled23 As you know I feel your frustration due to the same concern. When you say..." + (show)
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@narelled23 As you know I feel your frustration due to the same concern.
When you say you have a full glass at times.

Can you tell the actual mucus from possible moisture, like other bodily fluids such as moisture from the lungs or saliva?

For me what happens is a fluid comes up to my throat, a feeling that causes me to want to clear it. It can go on nearly all day long.

When I hold up my clear solo cup, that I bring it all up into, to the light to check for mucus with having let it sit in the cup for 8 or more hours, there is yellow mucus at the bottom of the cup with some still floating and then there is what looks like other fluids such as moisture/water/saliva.
When I found a photo on the internet of what it suggested we bring up with clearing for BE, I it looked exactly what I have in the solo cup after clearing.
Barbara

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@blm1007blm1007
...come down my throat..

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blm1007blm1007 | @blm1007blm1007 | Apr 27 9:03am

@narelled23 I will pay closer attention because I feel it comes up my throat.
I wonder, if it is possible, if you have some coming down to the throat and some coming up.?
So hard to tell with some things and the body can have several things going on at one time, as we know.
Barbara

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blm1007blm1007 | @blm1007blm1007 | Apr 27 9:19am

@narelled23 Yes, much of it is grayish color in the cup with the mucus flowing to the bottom. It takes a good time to settle in the bottom to see how much mucus one has brought up.
When I first do the clearance, removal, their is foamy, white, bubbly that settles down and becomes part of the grayish.
The grayish part in the cup I believe is mostly moisture that releases from the areas of our body that produces bile, phlegm, mucus, saliva and water. Don't know for sure, but we release moisture from all parts of our body!!!!
Over all, what I bring up during the day and when doing Air Way Clearance it is always thick not just watery.
So maybe it is a combination of fluids that I clear and remove when it comes to the throat.
Barbara

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toni4501 | @toni4501 | Apr 27 6:29pm
In reply to @irenea8 "@toni4501 I also wonder about that. My experience is that when I do not have much..." + (show)
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@toni4501
I also wonder about that. My experience is that when I do not have much infection (only occurs during or immediately after IV antibiotics for one week) then I do not produce hardly any mucus and I feel better. Once the infection builds back up which it does quickly then the mucus begins again and I start to feel sick again. If we have BE would we not have mucus to clear even without any infection going on? Clear mucus?

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@irenea8 I understand completely because I also though the over production of mucus was from the BE regardless.

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narelled23 | @narelled23 | Apr 28 1:49am
In reply to @blm1007blm1007 "@narelled23 I will pay closer attention because I feel it comes up my throat. I wonder,..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

@narelled23 I will pay closer attention because I feel it comes up my throat.
I wonder, if it is possible, if you have some coming down to the throat and some coming up.?
So hard to tell with some things and the body can have several things going on at one time, as we know.
Barbara

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@blm1007blm1007

I suspect it is both which may explain why it has been so difficult to pinpoint. It is very frustrating isn't it! But if I might add, not nearly as worrying as SOB.

Maybe the Immunologist will be able to enlighten me eventually however I am not holding my breath. 😘

Narelle

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blm1007blm1007 | @blm1007blm1007 | Apr 28 8:53am
In reply to @narelled23 "@blm1007blm1007 I suspect it is both which may explain why it has been so difficult to..." + (show)
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@blm1007blm1007

I suspect it is both which may explain why it has been so difficult to pinpoint. It is very frustrating isn't it! But if I might add, not nearly as worrying as SOB.

Maybe the Immunologist will be able to enlighten me eventually however I am not holding my breath. 😘

Narelle

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@narelled23 Maybe.....hope so...... about the immunologist enlightening you.
Agree about SOB. Horrible feeling and frightening, I would imagine. Something I hope not to go through.
P.S. Glad you are not holding your breath....so to speak.🤣 Not sure how long I could hold mine. 😉
Barbara

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