Life while being treated

For me, it's the best airway clearance - it fits in my life, and I get my heartrate up and steps in - triple play! I just have to remind my Yoga group when I step away to cough that I'm not going to infect them with anything. I also find a lot of bending/reaching in the house or garden can have the same effect.

Here is a great (but long) Webinar on airway clearance and why, from one of the bronchectasis experts.:

I've watched the youtube video you recommended, learned a lot, and don't understand why not one single doctor over the past 13 years has recommended airway clearance!! The breathing exercises seem important. I'm really impressed with the stats regarding nebulized hypertonic saline and the resulting decrease, for many people, in bacterial load. Can you, or others, recommend a portable nebulizer brand? Safe to buy from Amazon? Or? And, how much saline does one typically go through when using the nebulizer once a day? Thank you very much for your help!

I've watched the youtube video you recommended, learned a lot, and don't understand why not one single doctor over the past 13 years has recommended airway clearance!! The breathing exercises seem important. I'm really impressed with the stats regarding nebulized hypertonic saline and the resulting decrease, for many people, in bacterial load. Can you, or others, recommend a portable nebulizer brand? Safe to buy from Amazon? Or? And, how much saline does one typically go through when using the nebulizer once a day? Thank you very much for your help!

Many people use the Ombra or Pari Pro Neb Max which are the compressors that nebulize (create the aerosol or mist) by pumping air through the liquid placed in the "cups" which are called nebulizers. There are several different types of nebulizers (cups). Sometimes we have to try a few different types of brands to find one that we like. Many people use the Aeroclipse XL BAN, some like the Pari Sprint or others. Make sure to read the info before purchasing to see that the cups (nebulizers) state that they are reusable after cleaning. I listed a couple of websites to get started with. There are several other medical companies online that carry these products.
https://www.saveritemedical.com
https://www.pari.com

I'm sure Sue and others will comment soon, but for travel, you can't beat the Pari Trek S, which you can buy on Amazon but a variety of other sources too. Just shop the best price. It's the one I use when I travel and hike. I bought the battery so I can carry it in my backpack when we're out for overnights away from power (with two batteries I could stay out a week easily). It also comes with an adapter to use in a car.

At home, I still use a tabletop Ombra, but a lot of folks I know solely use the Pari S.

Laurel

Thank you!!

I am "on a break" from saline nebs unless I detect an issue - for example, it is tree pollen allergy time, so I will begin nebbing 1-2 times a week as a protective measure.
My airway clearance is Breyna (generic Symbicort) inhaler, a glass of water, then my coffee, followed by one of these - 30 minutes yoga, a brisk walk followed by huff coughing, or pattern breathing with Aerobika. I don't even know what you would call my pattern, a combination of deep breaths, holds, coughs, Aerobika if needed, and if the mucus is stubborn some inverted poses. If I'm using saline, it's after coffee and before clearance.
So my airway clearance is integrated into my morning routine and takes about 10-20 minutes after yoga or walking. How far do I walk? 15 minutes to an hour depending on weather and time I have.
After that I have breakfast.

(Not shouting here, just emphasizing) I DO NOT TRY TO GET EVERY DROP OF MUCUS UP THROUGH AIRWAY CLEARANCE BECAUSE I WOULD NEVER BE DONE. I expel mucus throughout the day with huff coughs and spitting or swallowing just like I have done for most of my life.

I am not prescribing my method for anyone else, just telling what works for me. Everyone needs to find a method that works for them and can integrate into their life. It took 5 years of trying things to get here, and I know it may need to be adjusted if my BE gets worse or I get MAC again.

This is the only way I can possibly keep this up for going on 7 years now. When I have an episode, I do this twice a day, but it's very rare right now.

Sue- This helped me to hear this because of what I go through each day.
" Not shouting here, just emphasizing) I DO NOT TRY TO GET EVERY DROP OF MUCUS UP THROUGH AIRWAY CLEARANCE BECAUSE I WOULD NEVER BE DONE. "

For some reason with all your posts I didn't picture, think, it is this way for you, " I expel mucus throughout the day".
Knowing that you do " huff coughs and spitting or swallowing just like I have done for most of my life" helps me in my understanding.
My mucus is so thick and as such I have a hard time swallowing it when I have tried to swallow it. What I find myself having to do is bring it up by way of sucking it up and out or huff coughing throughout the day. I believe you take Mucinex and NAC. I wonder if the reason you started taking it was to thin it out so you could swallow it.
I am so frustrated with it being, what I would call, stuck in my throat the majority of time..... meaning all hours of the day and at night when I wake up to do what my bladder tells me it needs to do. I do end up getting it up and out only for more to immediately form in the throat again causing me to clear it out nearly all day long.
With all you have read in the posts through the last six or seven years do you think this is common, than not, for us with BE??? Throat clearing because of what one feels in the throat???
Thank you Sue for sharing.
Barbara

Thank you! The regimen suggested to me is 3 different drugs, 3 times per week for 6 months after testing negative for MAC. Is that similar to your protocol?

@winema I don't know if someone has already commented on this but the treating guidelines, and as far as I can tell the NTM experts generally, recommend 12 months of the recommended antibiotic treatment once the patient tests negative for MAC. You may want to review the treating guidelines and circle back with your doctor on the suggested 6 months. Obviously 12 months is a long time (and who wouldn't want to cut that in half) but the general consensus seems to be that patients have a better chance at staying clear of the MAC with a full 12 months of treatment, measured again from the date the patient tests negative for MAC. Good luck!