Nebulizing

Also there is never a time I don’t have twitching and folding sensation at the very bottom of my lungs. I guess could be diaphragm. Nothing shows on CT scan to be causing this

I don’t have pain or tightness after nebulizer 7% saline. I’m commenting to bump up the question.

I used the search bar for pain with nebulizer and the first that popped up has a comment from Scoop with suggestions: https://connect.mayoclinic.org/discussion/saline-nebulizer-question/
There are probably others-just took Quick Look.

Hi Renee - When I first started nebulizing with Tobramycin (for Pseudomonas - they had to get that "out of the way" to treat my MAC) that was how I felt.
The crusty old pulmonologist didn't seem to care, but his very helpful nurse set up a nebulizer with just a little saline and monitored my technique. She told me I was working too hard!
She taught me to sit comfortably in a firm chair - no nebbing while slouched on the comfy sofa. This fully expands your lungs and your chest cavity. Put a glass of water nearby, relax with a few deep breathes, bring the nebulizer to my lips and breathe NORMALLY. If it started to hurt, she had me pause, take a sip of water and a few more deep breaths, and restart.
She also told me - no clenching the mouthpiece in your teeth because it tenses up all of your muscles when you do that and you are setting yourself up for problems. And no trying to take extra-deep breaths to "get the mist deeper" - gravity will do that for you. It took a little awareness and practice, but I haven't had the problem again.

When our "littles" first needed to neb (as 2-3 year olds) my daughter to me to stand them between my legs so their lungs were fully expanded to do their treatments, this made sure their lungs were fully expanded.

How do you sit when you neb?

Hi Sue, I usually sit on the floor with my back against the couch.
Today I did airway clearance with Aerobika , no saline. Still had shortness of breath afterwards. I see Dr McShane next week.
This NTM and Bronchiectasis is such a battle and so much fear attached to it.

I feel chest pain at the end of awc as I do it vigorously, sometimes I am on aerobika over 1 hour
I was advised to do it for 15- 20 mins so I don't feel chest pain any more.
No breathless but aerobika takes a lot of efforts and I usually do 30 or 40 big deep breath, instead of 90.

I try to forget all fear as it is useless, only adding burden on our shoulders.
I had very good experience just to forget those annoyance and never think about it. It worked very well so I kept using this strategy and it still works most of the time.

Renee, can you explain why you are fearful? I'm a "little old lady" and while I recall being scared when first diagnosed, the more I learned, the more I was able to accept that Bronchiectasis and MAC were just a part of this journey called LIFE.

I knew that the MAC treatment was going to be tough- and it was. But I get through with the help of this group, and am now 5 years antibiotic-free.

Then there were all the lifestyle changes
- Airway clearance, how and how much and later 7%saline
- How dangerous is the water - test, boil, use bottled, eat ice or not?
- Mask or not (this was pre-Covid), to isolate or not, are vaccines good or bad...

Here is what helped me turn the corner (5 years ago) - I was with the ID doc, feeling horribly sick from daily antibiotics, weighing less than 100 lbs and in tears. He sat me down and recommended stopping the meds and "getting my life back."

His explanation - the antibiotics have done all they can for you, your CT looks better, you can continue airway clearance with saline to keep the germs knocked down.

Then he said this MAGIC PHRASE "Bronchiectasis is a disease you will live with, not die from. You need to figure out how to do it the best way for you."

We went on to discuss taking reasonable precautions vs trying to stay 100% safe (there is no such thing), adjusting over time based on my health, paying attention to the latest research, avoiding extreme measures, and working with my pulmonologist.

My adjustments over time have included ignoring the extreme advice, treating my asthma first, as it is more severe than my BE, reducing saline nebs as I got healthier, substituting exercise for other airway clearance techniques if I when healthy, periodic monitoring with CT scans (every 2 years while stable) and sputum cultures (once a year if negative) and a "rapid response" plan for exacerbation.

Continued precautions include ignoring extreme advice, using .2 micron filtered or spring water, no indoor pool or spas (sad because my grands love them), washing equipment daily and sterilizing weekly, staying away from sick people, precautions while gardening, vaccination and other preventive medicine and paying VERY close attention to my lungs and health.

What can I help you do to overcome your feelings of fear?