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need help: how to cut back time spent managing BE and MAC
MAC & Bronchiectasis | Last Active: Oct 7, 2025 | Replies (30)Comment receiving replies
@bayarea58 and @six5532one This is a demanding disease to manage, especially during the acute treatment phase. I know that I whined a lot and wallowed in misery many days in 2018 and 2019. Talking to people here who understood helped a lot. One day my primary and I talked for quite a long time, and she assured me I would adjust. Now, almost 6 years off antibiotics, I am stable, no MAC or pseudomonas in my latest cultures. I still do daily airway clearance, exercise, take precautions, manage my asthma, watch closely for exacerbations, and generally live my life.
The hardest thing for me was to get over the idea that I am fragile! I wouldn't have made it to 74, through a number of health issues including asthma bronchiectasis arthritis heart disease and numerous ortho surgeries if I wasn't tough.
I'll bet if you think about it you are too! Over time you will figure out ways to integrate your routine into your life. For example I treated myself to the fastest nebulizer I could buy, reducing sales neb time from 20 minutes to six. Then I exercise or walk for 15 minutes to loosen the mucus. By then 19 minutes of Aerobika or huff coughing clears me.
I soak my equipment in hot soapy water and rinse after every use, but only sterilized once or twice a week. We installed point-of-use .2 micron water filter at the kitchen sink- no more boiling water. We keep our water heater at 135F so NTM can't grow in our hot water system. All time savers to make life more pleasant.
Can you think of one or 2 things you can do to make life easier?
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Hello @sueinmn, @six5532one and all "BE colleagues" that look for ways to cut down daily care time keeping quality.
For your information, it takes me close to one hour to nebulize around 4 ml 7% saline, considering I cough up after each inspiration ( even when I do Atrovent in advance to open up the bronqui); so I must turn off the compresor to cough (I think coughing over any piece of the device must be avoided) and take one or two normal breath before keep up with the process. Then, cleaning the nebulizer cup takes me about 20 min: (1) rinse, (2) put in warm water + soap for 10 min, please note that I wash the cup separated from the mouthpiece since the last one had direct contact with inner mouth fluids, so after rinsing with hot water soak mouth piece in vinegar for 20 min, then rinse again with boiling water. Back to the cup, (3) is rinsed with hot water 65°C from the running hot water system and then (4) rinsed again with 98°C just boiled water, where I leave it for 3-5 min (same with mouthpiece). All pieces to air dry in a closed cabinet, Next nebulization, I use another set, allowing the first set to dry completely. Assembling the nebulizer: I wash my hands very thoroughly and dry them with a clean towel that is in the cabinet that no one else opens, it is one use towel that was dried at high temperature. Having not listed the less demading tasks that we must complete to insure optimal hygiene of the compressor-nebulizer set, I really believe you have all experienced that the process is not only time consuming, it requieres extra care, attention and focus to make sure we are minimizing the risk of introducing a new microorganism to our damaged lungs.
Now, my questions:
Is it really necessary to nebulize all 4 o 5 ml? Or is it just how long you expose your lungs to salty air that counts?
Please what type of compressor? Or nebulizer allows to do 5 ml saline 7% in 6 minutes?
I would appreciated greatly comments and recomendations that allowed me to optimize my experience.
Wishing all the best to our community and thanking for all de excellent information that you all share.