1. < MAC & Bronchiectasis

‘‘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.

Granny | @goddard | Dec 28, 2020
In reply to @migizii "I concur with you now, Thumperguy! I don’t mind the time it takes each day (most..." + (show)
@migizii

I concur with you now, Thumperguy! I don’t mind the time it takes each day (most of the time) now that I am retired; but I just retired due to covid, so prior to that it really was stressful to get everything done before and after my workdays, along with making sure to not eat for two hours before nebulizing, etc.....it’s almost relaxing now-except the incessant coughing.😜

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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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1 reply
kathyhg | @kathyhg | Dec 28, 2020

Why do you wait 2 hours after eating before you use your nebulizer?

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ellenn | @ellenn | Dec 28, 2020
In reply to @sueinmn "I have only been here a couple of years, but I agree we are definitely seeing..." + (show)
@sueinmn

I have only been here a couple of years, but I agree we are definitely seeing a big improvement as we encourage people to advocate for themselves and get on the 7% saline.
I think it probably falls in the same "low tech" category as using ice for post-surgical swelling - nobody profits from it, so there are no drug companies promoting it, and it takes a forum like May Connect to publicize it and get a lot of people benefiting from it.
My husband, who had a retirement career as an EMT, often says if drug companies could figure out how to charge for ice, it would cost $10 a cube - it's that good for swelling.
Sue

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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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3 replies
ginak | @ginak | Dec 28, 2020
In reply to @ellenn "Thanks everyone for connecting to those of us who feel so alone at times! Does anyone..." + (show)
@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

Jump to this post

@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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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 28, 2020
In reply to @ellenn "Thanks everyone for connecting to those of us who feel so alone at times! Does anyone..." + (show)
@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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1 reply
ellenn | @ellenn | Dec 28, 2020
In reply to @sueinmn "Hi Ellen - I have not coughed up blood since my pneumonia was at its worst,..." + (show)
@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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baz10 | @baz10 | Dec 28, 2020

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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baz10 | @baz10 | Dec 28, 2020
In reply to @ginak "@ellenn Hi Ellen, I’ve also coughed up blood a few times. I know it is something..." + (show)
@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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jr2366 (Jennifer) | @jr2366 | Dec 28, 2020
In reply to @windwalker "Jennifer, I hope you don't mind my jumping in here on this conversation. I first learned..." + (show)
@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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Jane S. Brown | @macjane | Dec 28, 2020

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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