need help: how to cut back time spent managing BE and MAC

Most of my rechecks are every 6 months, including a chest CT. It helps that my rx for the antibiotics as well as the saline are for 90 day supply of each, and it renewable with 3 refills, so it last one year. My diagnosis is bronchiectasis and MAC.

This sounds like a lot, but you did not say what effects you were experiencing before treatment. If you only have a mild infections this sounds like overkill, but a serious infection requires you to go to war against it. The only small suggestion I can offer to shorten your list is to have your meds renewed, paid and delivered automatically, an arrangement I have with CVS. Best of luck.

@six5532one I wish I had something to offer but your schedule is much like mine except that my opthalmologist told me once a year was sufficient unless I notice a change, same with hearing. How long have you been on treatment? Have you discussed this with your doctors, they may have some advice for you? It's not fun but for me, I hang in there and do all I can to get rid of this nasty bacteria and look forward to an easier future. Once we get there we will appreciate time like we probably never did before. 😊

@six5532one Another thought...are you using a baby bottle sterilizer for your Aerobika and nebulizer parts (not tubing). I have 2 Aeroclipse nebulizer cups, use one in the morning which I rinse and put in sterilizer, then I use the other one in the afternoon and rinse, soak in clear dishwashing soap along with the Arikayce nebulizer, rinse and then put in the sterilizer and run it. I bought one that has a drying function so I leave everything in there overnight and put it all away the next morning when the process starts all over. I am careful to make sure I rotate the Aerobikas so the one that did not soak in dw detergent gets used in the evening so I at least soak it every other day. I found this to be so much easier than having to boil water and then have parts constantly sitting on the counter drying.

If you are having a hard time acquiring a vest, you may need to see another pulmonologist. I've never heard of anyone not getting a prescription for a vest who asked for one.
Also, if you are doing airway clearance with nebulized saline, there are two devices I'm aware of that cut the time way down. One is the Volara by Baxter Hill Rom. And the other is the BiWaze Clear by ABM. You can Google those and see if either seems like something that would help you. Again, your pulmonologist needs to prescribe those. Yes, this is a very time consuming illness, And no one enjoys what it takes to manage. But if you get a routine going and just accept it all like brushing your teeth and showering, you may not be so angry about what it takes. At least there are things we can do to help. I wish you the best.

@six5532one I am currently in my second full month of treatment for cavitary NTM and my time demands look similar to yours, with the exception that I have more doctors appts (including recent ER visit) due to bumps with treatment, etc. I also have more appointments for regular drug monitoring, I get bloodwork initially bi-weekly, now monthly. I am supposed to see ophthalmologist monthly (but this has become a scheduling nightmare with Kaiser so maybe not due to their inability to meet the demand), and I need monthly dental cleanings due to staining from rifampin.

I assume you are looking for 10% to do sputum induction at home, which obviously would save time. It’s hard to find. My pulmonologist said she had never heard of it. If you have access to mail order that might be a solution as I have found mail order supplies to be broader (and more plentiful) than my local pharmacy. Have you tried double vialing with nebulizer? That works for me, certainly for the AFB test. My last respiratory sample (different from AFB) was rejected but I think that is more of a technique issue and would not have improved with 10%. I also agree with others about using mail order for all your pharmaceuticals. For me my copay is less using mail order, I get 90 day supply, and best part of course is it’s mailed directly to me. No issues so far.

So what to say, I spend more time than you. And yes it stinks. Particularly because I felt fine before treatment started and now I do not. I am racking up issues with each new week on the drugs. I get the anger piece 100%.

I tell myself a lot of other people have it much worse than me and counsel myself to be grateful for the quality of life I still have. Some days it works, but I confess lately, it seems I more often than not find myself wallowing a bit in my self-pity. 🙁

@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?

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.

Great description of your process, but several of your steps seem unnecessary to me based on what I have learned.
It is not necessary to wash and rinse the parts separately-the soap, hot water and rinsing remove the bacteria. Daily vinegar soaking is not needed if you are heating the pieces. One use towels - I am careful to not touch inside the parts and not worried that any minute amount of bacteria might migrate from outside to inside. Finally, if you are using two sets daily, you could rinse the first set and leave them in a bowl, then clean both sets at once. If you remove them from the water while it is still hot and shake off any drops they will be dry for the next use.

As for time to nebulize, Iuse the Pari eFlow Rapid, which takes under 10 minutes even when stopping to cough. Considering this is a lifetime commitment, it seemed prudent to my husband and me to do what was possible to make good use of my time. Even before that, I used a DeVilBiss Traveler, which took about 15-17 minutes.

All nebulizers are designed such that roughly 1ml of the solution is left behind in the bowl or mouthpiece so you don't get the full quantity into your lungs. Dosages are calculated with that in mind.

When it comes to saline, there is no "set" amount. You need enough to thin the mucus and get it moving. That can vary between individuals and for any person it might change from day to day.

Coughing while webbing is another individual thing. I was taught to try NOT to cough while ding the saline, but to wait until it penetrated then do deep breaths and huff coughs to get the mucus up.
Sorry to cut this short. On a road trip and it is my turn to drive.

@2019mc and @sueinmn
Your discussion has me curious about a couple of things and how we all come to different conclusions and methods.
I have a couple of people in the field, with one being Dr. Falkinham, that I am going to contact for their input and will share if it appears it would be of help to us all and if I receive an answer.

Barbara