‘‘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

@sueinmn

Your story sounds like mine – my brothers could not understand why I stayed where I was when I could have gone to "big tech" and earned a lot more money. But, I wanted to be able to retire by by age 60, with an assured pension (yes, I did contribute quite a lot to it) and consistent health insurance into my old age. It is good fortune that we had foresight – not everyone does.

After watching the difference between my Mom, with her good, continuous insurance and her sisters and friends, with their Medicare & costly care, I knew I was making the right decision. Now I am watching my brothers and several friends pay 2-3 times more for their (less robust) insurance than I pay for my old employer's plan – and deal with much more restriction and sky-high copays. And with my pension, I don't have to panic every time the stock market takes a downturn, or savings interest rates are below inflation – my income stays the same, even if it doesn't match the rate of inflation very well…
Sue

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Exactly!

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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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Hello Sue, your post is great, a great gift for MAC/bronchiectasis patients, it brings organized knowlegde and hope, thank you and HNY

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@ellenn I've coughed up about 2-3 TBS blood twice over the past 3 years (a combination of red blood and clots). The first time was while I was swimming laps. I went to the ER because I was scared, and that, eventually, led (after about 1 ½ yrs) to the diagnosis of bronchiectasis and MAC. The second time I was in another state from my infectious disease (ID) doctor, so she suggested I go to my GP there and have her check my vitals, especially my oxygen levels. They turned out to be fine and I felt fine except for the blood. When I reported bac to my ID doctor, she told me not to worry. I now have a pulse oximeter to check my own oxygen leve. I cough in the mornings, but don’t really have any other symptoms and don’t take any antibiotics. I exercise/walk 2-3 miles daily.
I've been investigating whether coughing up blood may actually be a good thing in MAC. In my reading of MAC articles, I found one called "Retrospective study of the predictors of mortality and radiographic deterioration in 782 patients with nodular/brochiectatic MAC lung disease" by Gochi et al. (https://www.ncbi.nlm.nih.gov/pubmed/26246077 ) From the article, very few people seemed to die of MAC-related issues. The women with bloody sputum fared the best. I've been trying to find out why.

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@lorifilipek

@ellenn I've coughed up about 2-3 TBS blood twice over the past 3 years (a combination of red blood and clots). The first time was while I was swimming laps. I went to the ER because I was scared, and that, eventually, led (after about 1 ½ yrs) to the diagnosis of bronchiectasis and MAC. The second time I was in another state from my infectious disease (ID) doctor, so she suggested I go to my GP there and have her check my vitals, especially my oxygen levels. They turned out to be fine and I felt fine except for the blood. When I reported bac to my ID doctor, she told me not to worry. I now have a pulse oximeter to check my own oxygen leve. I cough in the mornings, but don’t really have any other symptoms and don’t take any antibiotics. I exercise/walk 2-3 miles daily.
I've been investigating whether coughing up blood may actually be a good thing in MAC. In my reading of MAC articles, I found one called "Retrospective study of the predictors of mortality and radiographic deterioration in 782 patients with nodular/brochiectatic MAC lung disease" by Gochi et al. (https://www.ncbi.nlm.nih.gov/pubmed/26246077 ) From the article, very few people seemed to die of MAC-related issues. The women with bloody sputum fared the best. I've been trying to find out why.

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@lorifilipek Lori, that is so interesting that women with bloody sputum fared the best. But so positive that very few people seemed to die of MAC-related issues. Thanks for sharing. Nan

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