‘‘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

@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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Cavlover, Without straining I just fill my lungs until my chest has comfortably expanded. It usually takes about 20 – 25 minutes for the saline “cloud” generated by the machine to approach insignificance. Don

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@cavlover

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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It all depends on what I'm reading in the paper! My neb takes 8-10 minutes – once I really start coughing stuff up, I quit, even if there is a little left in the cup. Then another 5-10 minutes of coughing. I use my inhaler 10 minutes or more before I neb.
Sue

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Thanks to Jennifer for raising all of these questions and providing us with more learning opportunities. I hope that Jennifer gets all of her questions answered. It is so stressful to find your way when you are diagnosed with bronchiectasis and Mac and this group has been a lifesaver for many of us.

I have another question for those who have shared information about other medical challenges: Do you think that these are coincidental or a result of (or in some way connected to) Mac? I seem to have become a regular at my doctor’s office and sometimes feel like I should add hypochondriac to my list of ailments.

Happy New Year to everyone and many thanks for being a continuing source of information and support!

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@kathyhg

Thanks to Jennifer for raising all of these questions and providing us with more learning opportunities. I hope that Jennifer gets all of her questions answered. It is so stressful to find your way when you are diagnosed with bronchiectasis and Mac and this group has been a lifesaver for many of us.

I have another question for those who have shared information about other medical challenges: Do you think that these are coincidental or a result of (or in some way connected to) Mac? I seem to have become a regular at my doctor’s office and sometimes feel like I should add hypochondriac to my list of ailments.

Happy New Year to everyone and many thanks for being a continuing source of information and support!

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Kathyhg …about your question regarding other medical challenges…I too have felt like a hypochondriac!! I would joke in the voice of RosaAnnRodannazanna and read off my litany of afflictions. I know that my hiatal hernia and gerd are related to the bronch and Mac for certain, but the heart rhythm problems, sleep apnea, allergies, arthritis and glaucoma I’m not too sure of. I just think it’s my physical machine parts (body) wearing out. I don’t know why my mother never told me about this!!! Ha ha ha. I do think that certain stressors in our lives cause certain weaknesses to flare up. My divorce caused me to experience broken heart syndrome. It quite literally felt like my heart was being ripped in two and I thought I was dying at the time the pain was so bad. After that is when I started to experience my atrial fibrillation and sleep apnea. Also some things are hereditary, like the hiatal hernia and allergies. Several members of my family have those conditions.
I do think there’s something to the ayervedic body types and medical proclivities that go along with each. In the end, it really doesn’t matter. We just have to come to terms with our individual situations and take care of ourselves as best we can.
This group of Mayo connect has been a source of inspiration, guidance and humor for all of us and I am grateful to have found it.
I hope that 2021 is a better and more hopeful year for all of us.

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@sueinmn

It all depends on what I'm reading in the paper! My neb takes 8-10 minutes – once I really start coughing stuff up, I quit, even if there is a little left in the cup. Then another 5-10 minutes of coughing. I use my inhaler 10 minutes or more before I neb.
Sue

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Thank you! At first, I worry that I’m not doing things right, but once I get in the swing of things, I feel more confident. The routine takes time, but it’s worth it if it’s clearing my lungs. I went for my first appointment since diagnosis. I asked about MAC and NTM, and he said that he didn’t need a sputum sample as it didn’t show on my CT. Even if It did show, it’s not like he’d change anything. If I were to get sick, he’d prescribe antibiotics. I’m not sure even then that he’d get a sputum sample first before prescribing any meds. But wouldn’t he need to do a sputum sample to know what meds to prescribe? Anyway in 6 months I’ll get another PFT.
I guess I can’t worry about what might be because worrying doesn’t help. It somehow makes me feel like I have control and I don’t.

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@kathyhg

Thanks to Jennifer for raising all of these questions and providing us with more learning opportunities. I hope that Jennifer gets all of her questions answered. It is so stressful to find your way when you are diagnosed with bronchiectasis and Mac and this group has been a lifesaver for many of us.

I have another question for those who have shared information about other medical challenges: Do you think that these are coincidental or a result of (or in some way connected to) Mac? I seem to have become a regular at my doctor’s office and sometimes feel like I should add hypochondriac to my list of ailments.

Happy New Year to everyone and many thanks for being a continuing source of information and support!

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Yes I sometimes read everyone’s message there saying and I have to think wow should I call my dr and ask him why is he giving me the medicine he gave me and not all the other stuff I’m reading that people are in for MAC I wonder why I’m on this and others are in different meds I’m still wondering that

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@jr2366

Yes I sometimes read everyone’s message there saying and I have to think wow should I call my dr and ask him why is he giving me the medicine he gave me and not all the other stuff I’m reading that people are in for MAC I wonder why I’m on this and others are in different meds I’m still wondering that

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jr2366 Jennifer. My doc put me on Arikayce alone. The reason being I cannot take the big 3 because of my heart rhythm problems and also because I had some serious allergies to some of the medications. There is also the cross reaction to heart meds. Just thought I’d chime in and point to some reasons why the Arikayce is prescribed by itself.

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@sounder27

jr2366 Jennifer. My doc put me on Arikayce alone. The reason being I cannot take the big 3 because of my heart rhythm problems and also because I had some serious allergies to some of the medications. There is also the cross reaction to heart meds. Just thought I’d chime in and point to some reasons why the Arikayce is prescribed by itself.

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@sounder27 That is interesting and certainly understandable. Being part of an Arikayce clinical trial requires me to be able to tolerate two of the three Big 3 meds. I am guessing you are not in the clinical trial of Arikayce?? I did not know there was any other option based on the approval status of that medication. Good to know! irene5

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