‘‘Twas the Night Before Christmas”

Posted by thumperguy @thumperguy, Dec 24, 2020

Not a creature was stirring not even a mouse. When all of a sudden there arose such a clamor I knew in a moment it must be St. Thumper. So steady the beat I was filled with confidence I had nothing to fear.
He went straight to his work and was soon on his way, but ere he went quiet I heard him declare “May the lungs be healthy and the airways clear.

Merry Christmas 2020 from Thumperguy

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

@ellenn

Thanks everyone for connecting to those of us who feel so alone at times!
Does anyone ever cough up blood? What do you do about it?
I wonder if I'm rupturing something by doing the Aerobica twice within 2-3 hours.
My husband also does the percussion before I use the Aerobica – maybe that's too much.
Also is your chest always tight, mine is.
Thanks, Ellen

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Sue is Aeorbica same as Arikayce ? I feel tightness as well in my chest and it’s only been about 12 days in . And feeling alone yea definitely and I feel like some of my questions are alittle but much like for instance can we live a long life with Mac ?

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@jr2366

Sue is Aeorbica same as Arikayce ? I feel tightness as well in my chest and it’s only been about 12 days in . And feeling alone yea definitely and I feel like some of my questions are alittle but much like for instance can we live a long life with Mac ?

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Aerobika, or a similar device called Acapella, are PEP (Positive Expiratory Pressure) devices that cause a vibration in the lungs when used. The purpose is to help loosen the very sticky mucus many of us have in our lungs so it can be expelled more easily by "huff coughing" which is a way to bring up the mucus.
This is a fairly lengthy but very informative video about airway clearance: https://www.youtube.com/watch?v=1Ufj3oU_M2w

Think of airway clearance as semi-permanent maintenance for your lungs – it is doing what your body doesn't, with lungs damaged by bronchiectasis, COPD or Cystic Fibrosis – cleans out mucus, which is where the bad stuff grows. The Arikayce, on the other hand is the antibiotic to kill the MAC, and is only used until the infection is gone.

Here's a description of a regimen for a MAC/bronchiectasis patient: Please note your docs may alter the order for you.
1) Use airway-opening inhaler (if any – often something like albuterol, levalbuterol, Flovent or Breo)
2) Use a saline neb (many of us use 7%, thought to inhibit the growth of MAC)
3) Use the Aerobika or Acapella device as directed, with huff coughing, to clear out mucus (Some people use other clearance methods like a percussion vest, manual percussion, or postural drainage)
4) Use the prescribed inhaled medication as directed.
5) Thoroughly clean all nebulizer equipment and the airway device.
6) Take any other medication according to directed schedule.

This sounds really daunting, I know, but my morning regimen takes about 20 minutes, and I do it while reading email and the morning paper. When I had to do the inhaled Tobramycin as well, it took and additional 20 minutes. After 2 1/2 years, it's just a habit now.
Sue

PS My Mom had bronchiectasis (the underlying condition that predisposes to MAC & pseudomonas) – she lived to be 84 and died of a totally unrelated cause. Once diagnosed, she faithfully used her neb, and huff-coughed, but we didn't know about the Acapella back then.

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So Sue the inhaler to open airways is for people on the Arikayce too I’m just making sure I’m doing the right thing for my self. Also should I be doing the saline too I’m not sure I do so new to it all thanks for your input on everything I do feel like I have good days and bad days with this Mac even with soreness in my lung that comes and goes guess it’s normal not sure though I told my dr about 3 weeks ago that I had the pain and is this normal he said yes then our me on the Arikayce once a day my voice is horrible and I’ve been using cepacol lozenges I’ve been gargling after nebulizer do you think sue that the voice will come back ? My dr said I need to be in the Arikayce fit 12-18 months I’m worried about my hoarseness and pray it do t last fir 18 months oh geeze what would I do?

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@jr2366

So Sue the inhaler to open airways is for people on the Arikayce too I’m just making sure I’m doing the right thing for my self. Also should I be doing the saline too I’m not sure I do so new to it all thanks for your input on everything I do feel like I have good days and bad days with this Mac even with soreness in my lung that comes and goes guess it’s normal not sure though I told my dr about 3 weeks ago that I had the pain and is this normal he said yes then our me on the Arikayce once a day my voice is horrible and I’ve been using cepacol lozenges I’ve been gargling after nebulizer do you think sue that the voice will come back ? My dr said I need to be in the Arikayce fit 12-18 months I’m worried about my hoarseness and pray it do t last fir 18 months oh geeze what would I do?

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jr2366 Your pulmonologist might recommend an inhaler prior doing the Arikayce. That will open your bronchiole tubes so the Arikayce can do its job. I use Breo. irene5

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@irene5

jr2366 Your pulmonologist might recommend an inhaler prior doing the Arikayce. That will open your bronchiole tubes so the Arikayce can do its job. I use Breo. irene5

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Yes maybe I don’t go see him until March though is that what you did as well?

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@goddard

Im interested in your comment you do not eat before nebulizing. I instinctively do not feel good doing it, but no one ever told me not to. And, if its more convenient, I kinda do it whenever. I've learned a lot from this group. In fact, I'd pretty much given up nebulizing/ aerobikaizing, but you guys sounded so upbeat about it all, I've started up again.

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When I was trained on nebulizing, I was told by the respiratory therapist to make sure I nebulized either two hours after eating or two hours before eating….I could always do it at longer intervals, but if I didn’t wait long enough, it could cause significant stomach upset. Thus, that’s why I’ve always done it that way. Hope this helps!

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@jr2366

Yes maybe I don’t go see him until March though is that what you did as well?

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It is recommended Jennifer when using Arikayce to use an inhaler to open up your bronchioles so yes, that is what I do. Even though your appointment isn’t until March can you email him/her with your questions and concerns through the hospital portal? irene5

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@irene5

jr2366 Your pulmonologist might recommend an inhaler prior doing the Arikayce. That will open your bronchiole tubes so the Arikayce can do its job. I use Breo. irene5

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I’m going to call him tomorrow and mention I feel little tightness in chest will the inhaler help that?

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@jr2366

I’m going to call him tomorrow and mention I feel little tightness in chest will the inhaler help that?

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I think it is good to call Jennifer, but chest tightness is a side effect of Arikayce. The inhaler is used to open the tubes going into your lungs so the Arikayce can get to the MAC more easily and kill each one. ( very simply put). There is info about that in the initial kit that came in the mail. You also have access to Panther Pharmacy to answer questions. Irene

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@sueinmn

Aerobika, or a similar device called Acapella, are PEP (Positive Expiratory Pressure) devices that cause a vibration in the lungs when used. The purpose is to help loosen the very sticky mucus many of us have in our lungs so it can be expelled more easily by "huff coughing" which is a way to bring up the mucus.
This is a fairly lengthy but very informative video about airway clearance: https://www.youtube.com/watch?v=1Ufj3oU_M2w

Think of airway clearance as semi-permanent maintenance for your lungs – it is doing what your body doesn't, with lungs damaged by bronchiectasis, COPD or Cystic Fibrosis – cleans out mucus, which is where the bad stuff grows. The Arikayce, on the other hand is the antibiotic to kill the MAC, and is only used until the infection is gone.

Here's a description of a regimen for a MAC/bronchiectasis patient: Please note your docs may alter the order for you.
1) Use airway-opening inhaler (if any – often something like albuterol, levalbuterol, Flovent or Breo)
2) Use a saline neb (many of us use 7%, thought to inhibit the growth of MAC)
3) Use the Aerobika or Acapella device as directed, with huff coughing, to clear out mucus (Some people use other clearance methods like a percussion vest, manual percussion, or postural drainage)
4) Use the prescribed inhaled medication as directed.
5) Thoroughly clean all nebulizer equipment and the airway device.
6) Take any other medication according to directed schedule.

This sounds really daunting, I know, but my morning regimen takes about 20 minutes, and I do it while reading email and the morning paper. When I had to do the inhaled Tobramycin as well, it took and additional 20 minutes. After 2 1/2 years, it's just a habit now.
Sue

PS My Mom had bronchiectasis (the underlying condition that predisposes to MAC & pseudomonas) – she lived to be 84 and died of a totally unrelated cause. Once diagnosed, she faithfully used her neb, and huff-coughed, but we didn't know about the Acapella back then.

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Hi Sue,
This is exactly my routine! This morning I added nebulizer with 7% saline. It is amazing how much more I was able to bring up. I was wondering what kind of breaths (ie regular, deep belly breaths, deep but only fill up half of lungs, etc.) you use with your nebulizer. Also how long does it take to nebulizer each day?

Happy holidays!

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