‘‘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

sue how are you how long have you been using the nebulizer? I have been on for 9 days I'm having a hard time with all of this but I know I have no choice just need some positive feed back from this all. your post did make me smile about your husband, and the bills hahah

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Hi Jennifer – Years? But for MAC/bronchiectasis, I have been using 7% saline in the neb for about 15 months – I also learned about it here. I use mine once a day, up it to twice if I fell congested, and add my asthma neb before airway clearance if my asthma is active, too.

I have managed to stay off medications for one year now with no exacerbations (of course, being isolated has helped since I am not exposed at many respiratory illnesses, but this is the first one-year period in over 15 years that I have not had bronchitis, pneumonia, or both! My pulmonologist was very happy at my visit in December.

Airway clearance is a combination of nebulizing, percussion (either manual or using a percussion vest like @thumperguy), aerobic exercise and/or an airway vibratory device like Acapela or Aerobika – followed by "huff coughing" to bring up the mucus in your lungs that provides a safe hiding place for bacteria. Here is a very good description of bronchiectasis and airway clearance in layman's language: https://www.med.unc.edu/medicine/pulmonary/bronchiectasis/patient-care/
A lot of our references seem to be very technical and hard to read all the way through, but I can provide more if you like.

Sue

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@kathyhg

Hi Jennifer. My respirologist calls nebulizing “airway clearance” and I’ve started calling it that after 15 months. I use 7% saline in it; no medication. I started on 3% saline once a day when I went off the Big 3 and switched to 7% twice a day after reading about it on this forum. It has kept my lungs clearer than the Big 3 did (my bacteria count was 3+ when I stopped the meds and has been around 1+ or 0 since about 3 months on the saline). I’m hoping to stay off medication indefinitely or minimally until there is a medication specifically for MAC, as I have read here is in the development/trial process.

I have no experience with other medication (besides the Big 3) but you’ll find many people on this forum can answer your question.

Take care,

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Kathy, like others on this board you've discovered that 7% rocks. My experience is similar to Sue's in that since beginning 7% the 2 to 3 exacerbations each year have gone bye bye. Currently about 15 months sans flare-up. I use a percussion vest along with the nebulizer. Re: the intrusion into one's daily life and the time it takes. It may seem odd, but I've come to "enjoy" the Thumper time, using it to check the news feed on the iphone, work on a crossword, or occasionally crank out a piece of whimsy like "Ridin' ole Thumper again or a visit from St. Thumper on Xmas eve. Perhaps I should acknowledge that all this is probably easier for me than for many others since I'm fully retired and haven't any children in the house so my daily life has fewer claims on available time. Interacting with people on this board is a gratifying experience as well. Which reminds me; Sue I definitely vote for "Wreeping." What a word! LOL, Don

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Merry Christmas and Happy New Year!

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@heathert

Hi everyone, Merry Xmas to you!

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Merry Christmas Heather!

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@sueinmn

Hi Kathy & Don – my husband and daughter say the are "wreeting" even though they clearly say "wreep, wreep, wreep" to me! That's what the herd greeted me with this morning when I delayed their breakfast by sleeping until 7:45. They also "wreep" when I use my nebulizer in the kitchen – my husband asked me to move it and I told him I will move when the piggies pay the bills.
Sue

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Sue. Girl you are too funny!

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@jr2366

sue how are you how long have you been using the nebulizer? I have been on for 9 days I'm having a hard time with all of this but I know I have no choice just need some positive feed back from this all. your post did make me smile about your husband, and the bills hahah

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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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@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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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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@thumperguy

Kathy, like others on this board you've discovered that 7% rocks. My experience is similar to Sue's in that since beginning 7% the 2 to 3 exacerbations each year have gone bye bye. Currently about 15 months sans flare-up. I use a percussion vest along with the nebulizer. Re: the intrusion into one's daily life and the time it takes. It may seem odd, but I've come to "enjoy" the Thumper time, using it to check the news feed on the iphone, work on a crossword, or occasionally crank out a piece of whimsy like "Ridin' ole Thumper again or a visit from St. Thumper on Xmas eve. Perhaps I should acknowledge that all this is probably easier for me than for many others since I'm fully retired and haven't any children in the house so my daily life has fewer claims on available time. Interacting with people on this board is a gratifying experience as well. Which reminds me; Sue I definitely vote for "Wreeping." What a word! LOL, Don

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

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@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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@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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@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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