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thumperguy (@thumperguy)

‘‘Twas the Night Before Christmas”

MAC & Bronchiectasis | Last Active: Jan 12 11:21am | Replies (76)

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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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Replies to "sue how are you how long have you been using the nebulizer? I have been on..."

I get the same reaction if I use my nebulizer in the kitchen!

To Jennifer (jr2366) – I know you were asking Sue how she adjusted but i thought I’d add my experience. I found the first few days/weeks to be the most challenging, in adjusting to airway clearance taking up to an hour in the morning and in the evening (after I decided to do it twice a day). I’ve come to accept that this will be a part of my life and I’d rather do this than be on medication again; I was on the Big 3 for 6 months before I developed tinnitus and lost hearing in my right ear. After hearing about other people’s experience, I am grateful to be able to manage with just this twice daily imposition to my day.

I hope you will find this forum as helpful as I have as the information and support make this disease a little more tolerable.

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

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.

Jennifer, tell us if you can, more about the “hard time” you’re having. And trash the notion that you have no choice. Your choosing to battle the enemy that’s compromising your lung health. You’re behaving like a mature adult. None of us like to have things arise that interfere with our comfortable routine.

Stay active on this forum and you may be surprised by finding a diamond-in-the-rough. End of lecture. Don😉