Have you decreased Airway Clearance from 2 down to 1 a day?

@pjas972j How often to do airway clearance is one of those million dollar questions that even the experts differ on. I faced it about 3 years ago.

That was after 2 years of being sick, a new diagnosis of Bronchiectasis, MAC, and Pseudomonas, almost two years of antibiotics and 2-3 times daily of airway clearance, and 3 more years of 1-2 times daily airway clearance. You are right, I tired of that life.

3 years ago, with my asthma controlled, and Bronchiectasis stable, my pulmonologists agreed to once daily clearance as long as I am healthy. I have even lowered my saline nebs to about once a week or as needed. This has kept me healthy with no exacerbations, antibiotics or prednisone except when I got Covid. At the first sign of a sniffle or scratchy throat I resume a full saline neb and airway clearance schedule for several days.

I still take precautions like filtered water, high temp on the water heater, keeping my equipment clean, masking in crowds or on planes and while gardening, and avoiding sick people. But I travel, go to classes and meetings, swim outdoors...I figure in my later years it's now or never!

Good morning! As Sue accurately stated, this is definitely a situation each person has to figure out based on their own comorbidities, lifestyle, exercise level, etc., but I've been once a day for probably at least four years. Now, I am super active and do lots and lots of aerobic exercise. (We hiked up Mt. Leconte here in the Great Smoky Mountains yesterday, for example. 16 miles roundtrip and over 4300 feet of elevation, so I'm not a typical BE patient for sure.)

In my case, again, like Sue, I take precautions. Water heater at 135, Safe Water shower filters at home and our travel trailer. LARQ water bottle (even though reflux has been ruled out in my case). I keep a mask in my backpack and also in my pocket when out walking in case it gets dusty, landscapers are mulching, etc. I avoid high-risk activities but still live my life. I've been NTM clear for going on 3 years and off all meds for just shy of two years.

I get up and start the coffee pot, then go do my airway clearance, which includes my Monarch vest and also nebulized saline and Aerobika and rarely, if ever, skip a day, even if I'm doing a lot of exercising.

Best of luck!!

Mucoid Pseudomonas for 15 years is a long time. I also have mucoid pseudo. which is the worse. I would keep doing twice a day nebs but that is just me since I have never minded the time it takes. How many IV antibiotics did you do in all those years? Sounds like the Colistin is working for you which is great. No side effects from it? How long have you been on it? My pulmo said it would have worse side effects than the Toby but I wonder if that is correct. Has the Brinsupri helped?

@irenea8 Over the 10 years before I found NJH I was on IV Meropenem, Doripenem, Zosyn, and Cefepime - some more than once. I was also given Levaquin a couple times. Tobramycin worked well at first, but damaged my vocal cords and I lost some hearing. My vocal cords still have some scarring but are mostly recovered.
Colistin has been great! I have been on it almost two years with no side effects. I use it two weeks on/off and it has kept my pseudomonas well-suppressed.
Brinsupri has reduced the inflammation in my lungs. The SED rate in my bloodwork has decreased, which is also positive. I sometimes get a short headache during the day that I didn't have before, and my blood pressure has gone up a little but it was low to start with. I still deal with a lot of fatigue, but I have struggled with good sleep since I entered menopause 20 years ago.

@sueinmn Thank you for the details, Sue. I do plan to keep up with all of my other precautions. I, too, have traveled over the years because, as you said, we are not getting any younger. I don't want to live in fear. I appreciate hearing from others how they have navigated this journey!

@laureltn I don't have a vest, but I do use the G5 percussor in its place. I keep masks in my purse, keep our water heater at 140, drink only boiled water or through a Lifestraw, etc. I appreciate your feedback and am glad that you are doing so well! 🙂

@pjas972j
Thanks much. I will re visit the Colistin with my Pulmo who felt it would be even harder on me than the Toby. Most people seem to think it is easier to tolerate (on this forum). I have done Meropenem IV three times in the past 15 months. I wish I could take the Brinsupri and I may try again. I had severe vertigo attacks starting after a few weeks on it and felt on the verge of vertigo much of the time as well. When I started the Brinsupri my chronic pseudo infection was bad. Now it is better after recent IV but still afraid to restart the Brinsupri for fear of the vertigo coming back. I am not sure I have heard from anyone else on Mayo forum that has mucoid strain Pseudo. Usually the Cystic Fibrosis people get it. I do not have CF.

I have Asthma, allergies, (diagnosed 20 yrs ago) Bronchiectasis (10 yrs ago) and recently COPD. Spent many yrs with bad infections particularly in winter...until I started taking the quad flu vaccine and also subsequently started 2 x daily hypertonic saline nebbing about 5 years ago. Over the last year I have cut it back to once a day, unless I start to feel something coming on (rarely) or I am unwell. I believe I am fine with once daily. In fact, some specialists have suggested cutting the saline out because they wondered if it was contributing to the volume of mucus I have gradually increased production of. However, my Bronchiectasis is mild and despite two positive sputum samples I have never contracted NTMs. It certainly seems to be dependent on very individual issues, as Sue indicated. Best wishes.

To add to the million dollar question of how many times a day to nebulize hypertonic saline, I’ve heard many people suggest that to much nebbing hypertonic saline actually irritates the lungs which produces more mucus. Does anyone know if any studies have been done on this? I currently nebulize 3x a day, and would love to cut back to at least 2x per day. I also nebulize a SABA (Levalbuteral) before each 7% saline. I definitely will ask my Dr. at my next appointment on May 5th. Any answer on any studies though would be appreciated. Thank-you.

@spider109

Sorry, don't have any studies, but certainly it was suggested to me by both specialist and physio to cut it out to see whether mucus production diminished. I continue to nebb once a day because I feel better airway clearance with nebbing.

Have started taking a daily antihistamine which has helped my shortness of breath and I feel that my mucus production has dropped...so thinking perhaps allergies have been driving the excess mucus production. Immunologist suggests my issues are multifactorial which makes it more difficult to diagnose and treat. Best wishes.