‘‘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

@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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Hi Ellen – I have not coughed up blood since my pneumonia was at its worst, but there are some here who do. My doc's guidance was "2 tsp or less, let it be. Continuous or copious, call me." You may want to call/email/text your own doc for advice.
As for chest tightness, do you have a "rescue inhaler" like albuterol? When my chest feel tight, I use it 20-30 minutes before airway clearance. It eases the tight feeling and opens airways so stuff comes up better.Again, ask your docs…
Sue

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@sueinmn

Hi Ellen – I have not coughed up blood since my pneumonia was at its worst, but there are some here who do. My doc's guidance was "2 tsp or less, let it be. Continuous or copious, call me." You may want to call/email/text your own doc for advice.
As for chest tightness, do you have a "rescue inhaler" like albuterol? When my chest feel tight, I use it 20-30 minutes before airway clearance. It eases the tight feeling and opens airways so stuff comes up better.Again, ask your docs…
Sue

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Thank you, Sue. Yesterday I had about a Tbs. But my sputum has been white for about 2 months…..Anyone else cough up blood occasionally?
I can't do Albuterol because it gives me rapid heartbeat.
I do text my Pulmonologist.
This site is so helpful tho. It adds to the knowledge I need to navigate thru MAC and Bronchiectasis.
Thank you all, Ellen

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Hi Ellen, I have to use Xopenex (Levalbuterol) in place of Albuterol due to a heart issue, so perhaps your Pulmonologist could prescribe that for you. I think with Bronchiectasis one will occasionally cough or spit up blood. Best wishes for a Healthy 2021! Baz

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@ginak

@ellenn Hi Ellen, I’ve also coughed up blood a few times. I know it is something that happens to people with Bronchiectasis if there is inflammation. Knowing that doesn’t make it any less scary or worrisome. If it’s just a little I see mixed in with sputum when I’m coughing, I just continue on about my day. A couple of times it has just “bubbled up”, (for want of a better explanation). That is the scary time. I just TRY to remain calm, stay in an upright position, and not move around too much. It stops quickly, but I always go to my pulmonologist or PCP the next day. I also take a break from my Aerobika for the next day. Thankfully, that has only happened 2 or 3 times in the past 4 years.
I hope it helps knowing you are not alone in this.
Gina

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Hi Ginak, What you have experienced sounds like what I have. I describe the episodes as "bubbling up" also. It seems as though you can hear it like a gyser that is going to blow and it is scary! Baz

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@windwalker

Jennifer, I hope you don't mind my jumping in here on this conversation. I first learned about nebulizing 7% saline in 2010 after reading a French medical journal that stated that mac patients were treated with inhaled 7% saline and had great success. They did not indicate that other drugs were used along with it, so I cannot say that it alone will get rid of mac. After reading that article, I asked my pulmonologists (several) about trying it. Their response was, "I have never heard of it and don't know what you are talking about." Well, I got sicker and sicker. I finally went to the Mayo clinic in 2013 and asked my dr if he would prescribe it for me. He said "Of course." because he was familiar with it. After using the saline and being on antibiotics; the frequent exacerbations stopped along with my annual hospital stays. I have to tell you that when I joined this site in 2013, NOBODY was doing the nebulized saline! The members here were suffering much worse with symptoms and flare-ups. Many were convinced they would even die. After pushing the 7% saline over the years; I see a big difference in our member's health and attitude. Lung clearance is lung cleaning. The less gunk left down in the lungs, the less likely the infections. Doing it twice a day gets the best results.

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Hi Terri I was just reading what you wrote this 7% saline how is this used and I’m already on a nebulizer once a day for Mac called Arikayce today I’m a little down just thinking of it all remember I’m only few weeks into this whole thing I just need lots of positive things to read only because I’m a nervous nelly wish I wasn’t but Terri this is interesting I’d like to hear more about this thanks

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So many of us are nervous. I think some of this is the holiday season as well with the Covid so much in the news. I would like to hear more as well.

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@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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