The Wages of a missed Neb session.

I very seldom have missed my 2x daily treatment and believe the last time l missed one was in December. My treatment takes an hour without counting time to disinfect devices and to calm my breath afterwards so that I can get going. An extremely burdensome activity!

I am two years without MAC showing up (waiting on final results of recent sample) and one year off antibiotics. If it showed up again, (yikes) I want to be confident that it wasn't something I did, or didn't do, that caused it. Yes there are other things I should be doing. Or would rather be doing. But my health is my first priority. Imo nothing else is as important. And for both bronchiectasis and bacteria, airway clearance is main treatment.

@rits....I agree with you. My neb and postural draining take 3 hours a day and I try never to miss them. I work on puzzles during nebulizing and listen to books on tape during draining. These activities make coughing tolerable.
I have been free of MAC for 6 years now and had only one or two bronciectasis exacerbations. Prior to treatment I had exacerbations every 6 weeks at least. The neb treatments keep my asthma under control unless I experience extraordinary triggers. I am content with the treatments, since I remember how horrible it was to cough 24 hours a day.

You are so right. I live that 24/7 with my husband who is diabetic, arthritic & has a hearing loss and have now added my 41yo daughter, who has chronic health issues and is recovering from a badly broken wrist & surgery.
This morning one of my best friends is in the ER with her husband, who is blind, has COPD and kidney failure, once again because he refuses to drink water and everything goes "kaflooey."
Sometimes, the best thing we can do is take a step back and be quiet for a while, then when the next crisis arrives, try to clue the doctor to what is going on and get her/him to press treatment options.
Another tactic I have tried with some success is to pick a clam moment and address how ONE aspect of their health impacts me (eg When you get low blood sugar, I get scared, it makes me worried that you are going to get sicker and we'll have to quit traveling, and I don't think I can do "XX" without your help. I would like to help keep it controlled better by giving you small, healthy snacks to eat even when you don't think you are hungry. Is there anything I else I can do to support you?)
Sometimes it takes 2-3 reps to sink in. Maybe your wife is reluctant to get into the fun of nebulizing, sitting, then cleaning...can you possible offer to take care of set up and cleaning of her equipment, and provide books, puzzles to work on? I tolerate nebbing better sitting in front of a fun jigsaw puzzle.
Sue

Thank you! Great advice! I am thinking, "Is there anyone else out there that has to use tactics to get stuff done"...Can't use the same to often though...Gotta be creative. Not going to be defeated by this virus or whatever it is. Each day is a new day. brush off all of yesterday and hope today will be a "springboard" for tomorrow...

Comments on this site is what keep me going...

As far as. any medical apparatus setup, I have been doing for the past 19 years, all she has to do is, as Nikki say, "Do it". Not bragging, just statement of fact, I make it very easy, even down to setting up the "pill boxes" weeks in advance. Wife is a Liver Transplant Recipient of 19 years and has to take the "Anti_Rejection" meds, so keeping it straight and ready in a timely manner is important. The downside of the anti rejection stuff makes her variable for everything that others might have...It has been tough during this time of Pandemic, but so far she has weathered the "storm"...

I use my vest twice a day while simultaneously inhaling 3% saline to my nebulizer attached to my Aerobika (bronchiectasis, pseudomonas). Since I started doing this I have been able to stay off a PICC line/and or intravenous antibiortics for pseudomonas flare ups. The vest exhausts me and I need a nap after using it. I will occasionally only use the Aerobika (with saline) in the evening if my stomach is not up to the vibrations from the vest. If I do an overnight with friends (common here in Southern California where we are all so separated), I don't take my vest; so I miss a morning and evening treatment (but I do take my Aerobika/nebulizer/saline). With this regimen I have been off antibiotics and home health care for over a year (although take 250 mg azithromycin daily). I have now read all the Jack Reacher (Lee Child) novels on my Kindle. If I didn't have my Kindle I would go nuts with those 30-minute vest treatments. Don't try to do them without some enjoyable diversion!

Wow, you've been at this for a long while.

Another thing I forgot to mention is that you can't underestimate the nasty fatigue that is part of Bronchiectasis. Sometimes it seems like just breathing or getting up to go the the bathroom is an insurmountable obstacle. Adding antirejection drugs is even more.
Good luck finding a strategy that works for you.
Sue

Cavlover, Now that you’ve “fessed-up” you can redeem yourself by posting reports on the forum of your “straight and narrow” compliance. I’m confident you’ll be swamped by supportive posts reminding you of what a good person you are. Who would’ve guessed how much fun this damnable ailment can lead to. Don. 😀

Don -
All I can say is that you are the only person who has EVER described this ailment as FUN. You, my friend have a wicked sense of humor.
Sue

I know this ailment and how I tackle it doesn’t mean I’m a good or bad person. I just know that I can be hard on myself and worry too much.

I suppose most contributors to this forum are old enough to be familiar with the wisdom conveyed by the suggestion that if one’s life is awash in lemons consider making lemonade. Truth to tell this forum affords me an opportunity to express myself verbally to a captive audience which is unique in my current life situation. Don