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To start or not to start the antibiotics?

MAC & Bronchiectasis | Last Active: Sep 10, 2023 | Replies (59)

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@benniej23

I just opened the box for the nebulizer and just became overwhelmed how much work it is. I have to clean it after each use? My doc recommended that I use it every 2-3 hours. That’s crazy. I work full time. Do you bring it with you on vacation? Just kind of depressed how much work it is going to be 🙁

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Replies to "I just opened the box for the nebulizer and just became overwhelmed how much work it..."

Wow! Every 2-3 hours and a full time job! That is a lot! I nebulize first thing in the morning, usually 7am, and then about 5pm*, before dinner. I do wash equipment in soap and water after each time, rinse with hot sterile water and put on clean towel to dry. I soak in vinegar and water at recommended ratios every couple weeks and try to sterilize by boiling once a week (which my doctor recommends). I am often grateful that I'm not trying to work, raise kids and all that. I do take it when away from home and do the best I can, but often once a day is what happens. Same with when we have guests here. I am not nearly as strict as many people, nor as sick. I'm hoping to avoid the antibiotics, as well as further deterioration of my lungs, so the effort is worth it to me, but I don't stress when I don't manage to do the max. *Often that 5pm airway clearance is a little rushed and not quite as thorough, but better than nothing.

Every step when first dealing with MAC and bronchiectasis seems like a lot, taken together they are overwhelming. First, lets' take a little step back and a deep breath, then talk about what is really important to staying healthy and off antibiotics.

What medication has the doctor recommended you neb every 2-3 hours? Most of us, unless we are in an exacerbation, neb saline either once or twice a day.

Nebbing - Some of us find we can use an albuterol or levalbuterol inhaler (2 puffs) 10 or 15 minutes before nebbing instead of a full albuterol neb. (Saves another 15-30 minutes.)

Airway Clearance - Using huff coughing, Aerobika, whatever technique works for you. If you don't have a lot of mucus, this can take as little as 5-10 minutes. If you are sick and plugged with mucus, longer. The object isn't to get every last bit of mucus out every time - it is to keep it loose and moving, minimize coughing, and observe the color and thickness - a change to green, greenish brown or cloudy signals a worsening infection and time to consult the doc.

Cleaning & Sterilizing - After nebbing, wash the neb cup & mouthpiece (not the tubing) thoroughly in hot soapy water and set it to dry on a clean towel. If you are using an Aerobika or Acapella device to help with airway clearance, do the same. Once a week, sterilize them - microwave sterilizer bag, baby bottle sterilizer or saucepan of boiling water on the stove.

What do I do? My bronchiectasis and lung images are "stable", my asthma controlled. I have very "sticky" mucus that has plagued me all my life. So in addition to nebbing & airway clearance, I use guaifenesin 600 mg time release and NAC 600 mg twice a day to thin it.
I have been off antibiotics nearly 4 years, and I nebbed saline & levalbuterol & did airway clearance twice a day after going off antibiotics (still was MAC positive) for over a year. Then I switched to a levalbuterol inhaler before neb - works just as well for me - and nebbed saline every morning. Still did airway clearance twice a day. For the past 6 months, I have used my inhaler and done airway clearance twice a day, but I have only been using the saline 3-4 times a week.
BUT---if I get a cold, stuffy nose, sore throat - any hint of respiratory illness - I go back to twice a day nebs, and if I get sick I go up to 3-4 times a day with my duoneb, and twice a day with saline. I had my last exacerbation (bronchitis) in February and got through it with a course of steroids and no antibiotics.

Everyone here will have a different story to tell, but the "magic" is learning how to keep your own body healthy with the least disruption.

So my morning routine takes about 20 minutes, and I do it while I read my email, in the evening 4-5 minutes, before I go to bed. Sterilizing once a week takes 20 minutes while I clean my kitchen. MAC bacteria is "slow to grow" so my ID doc agrees that once a week sterilization is adequate unless I have pneumonia or another infection.

Yes, my nebulizer does go with me on vacation (just like it used to go on business trips when I was working.) I keep a supply of disposable neb cups for traveling on long trips - use & wash for 7 days, then replace instead of sterilizing.

Can anyone else share how they have fitted their routine into their life?
Sue