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

Posted by six5532one @six5532one, Sep 16 8:00pm

I spend much more time than I'd like managing bronchiectasis and MAC. I am taking Azithromycin and Ethambutol and will start Clofazimine tomorrow. I desperately need to cut down the time I spend on this because it makes me so angry that I'm having angry outbursts about this almost every day. Below, I've listed the things that consume time. For those who've taken drug therapy for MAC, I would value a comparison of the bullet points below with your experience so I have input about which things to cut back on.

* airway clearance for 1.5 hrs daily

* sputum induction at the pulmonary function lab 1x/month. I can't product a sample without 10% saline. My pulmonologist sent a prescription for 10% saline to 3 different pharmacies and I've spent weeks following up on this with no success.

* blood draw for metabolic panel and CBC once every 6-8 weeks

* ophthalmologist visit every 2.5 months to monitor for ethambutol toxicity. One ophthalmologist said to see them every 2 months and the other said every 3 months.

* hearing exam every 3 months to monitor for Azithromycin-induced ototoxicity

* appointment with infectious disease doctor every 2 months to discuss treatment next steps

* EKG every 1-3 months while on Clofazimine, since both Clofazimine and Azithromycin are potentially QT-prolonging drugs

* CT scan and bronchoscopy as needed

* appointment with pulmonologist every 4-6 months

* pharmacy every month for antibiotics and/or saline

* research and coordination to improve airway clearance because what I'm doing isn't working. Example: spending lots of time trying to acquire a vest

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

catfish3012 | @catfish3012 | Sep 23 1:20pm

In reply to @2019mc "Hello @sueinmn, @six5532one and all "BE colleagues" that look for ways to cut down daily care..." + (show)

@2019mc

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.

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Wow....has all that work kept you healthier?

2019mc | @2019mc | Sep 23 2:18pm

In reply to @blm1007blm1007 "@2019mc and @sueinmn Your discussion has me curious about a couple of things and how we..." + (show)

@blm1007blm1007, looking forward to your sharing of information, thanks.

2019mc | @2019mc | Sep 23 4:41pm

In reply to @catfish3012 "Wow....has all that work kept you healthier?" + (show)

Yes! It has.
In 4 years, I have had three exacerbations, all of them following vacations when I failed to nebulize.

blm1007blm1007 | @blm1007blm1007 | Sep 24 4:32pm

In reply to @2019mc "Yes! It has. In 4 years, I have had three exacerbations, all of them following vacations..." + (show)

@2019mc What does "failed to nebulize" mean? Did not nebulize at all, only nebulized once in two days, three days etc. Curious if you don't mind.
A well meaning pulmonologist indicated I could skip a couple of days if going out of town etc. A patient on this site then said something to the effect of comparing it to brushing your teeth....and we sure don't want to do that...not brush our teeth at least 2x daily!
So far I have not had an exacerbation. I was diagnosed in 2022 and knowing now what I know. (in hindsight)....I had BE and a MAC infection a good couple of years before being diagnosed but always being told..."your healthy." I have the intracellular infection, low load so far and waiting for a sputum result... it is 30 days in the lab and possibly 30 days before the final results. Always anxious during the waiting period but try to put it out of my mind with hopes of it being stable at a low load.
Barbara

2019mc | @2019mc | Sep 24 9:13pm

In reply to @blm1007blm1007 "@2019mc What does "failed to nebulize" mean? Did not nebulize at all, only nebulized once in..." + (show)

@blm1007blm1007
Bárbara, this last vacation I did not nebulize for about 10-12 days, I got a virus ( also was negligent not carring along a face mask at all times) I guess from a crowded site, I had an exacerbation (needed 2 rows of 2 different antibiotics), now I am ok + nebulizing daily. This was my third time that failing to take care for more than a week led to exacerbation needing antibiotics, a long time to fully recover.

pacathy | @pacathy | Sep 25 5:19am

In reply to @2019mc "@blm1007blm1007 Bárbara, this last vacation I did not nebulize for about 10-12 days, I got a..." + (show)

@2019mc I'm curious if you did other things to compensate for not nebbing like using an inhaler, Acapella or Autogenic drainage?I love to travel and look for shortcuts.

blm1007blm1007 | @blm1007blm1007 | Sep 25 9:54am

In reply to @pacathy "@2019mc I'm curious if you did other things to compensate for not nebbing like using an..." + (show)

@pacathy Moisture, moisture, moisture to loosen the mucus. I believe it was Scoop that stated recently the importance of hydrating.....Several here on Mayo talk about how much easier it is to bring the mucus up with warm water sips.
This is what AI came up with:
" How dehydration worsens bronchiectasis
In bronchiectasis, the walls of the airways are damaged and widened, which impairs their ability to clear mucus effectively. A lack of proper hydration can create a vicious cycle that worsens this condition."
Sadly many of us do not drink enough water starting at a young age. I myself was often, prior to my diagnosis, was told by the Primary Care Doctor I was dehydrated. I believe it may be one of the possible factors for me having the problems I have.
Barbara

blm1007blm1007 | @blm1007blm1007 | Sep 25 9:59am

In reply to @2019mc "@blm1007blm1007 Bárbara, this last vacation I did not nebulize for about 10-12 days, I got a..." + (show)

@2019mc O.K. got it!!!
Hopefully you will be doing more traveling and doing all the things necessary to keep yourself away from the antibiotics.!!!!
I am nebulizing first thing in the mornings after a bit of exercise and then the last thing in the evening. For me that gives me a greater amount of time in between neb sessions to do other things and I believe helps in the sleep/recovery down time.
Barbara

2019mc | @2019mc | Sep 27 7:59pm

In reply to @pacathy "@2019mc I'm curious if you did other things to compensate for not nebbing like using an..." + (show)

@pacathy
I guess I did not feel a need for compensation since I was feeling fine. Most of the time I do not have any difficulty because of BE+MAC, but I keep well hydrated and moving. I also try practicing deep abdominal breathing just a couple of minutes several times during the day, when possible I use an Autogenic Drainage App. I like to walk, try to do 6 km in an hour when possible, but during vacation it was the sightseeing that I counted as exercise. I mostly take it easy, the difficult part for me is sanitizing the nebulizer, if not al home. Hopefully you will find a way and not get an exacerbation. Good luck.

pacathy | @pacathy | Sep 28 7:10pm

In reply to @2019mc "@pacathy I guess I did not feel a need for compensation since I was feeling fine...." + (show)

@2019mc Thanks. That sounds like what I did on a hiking trip last fall. Deep breathing, walking and AD app. I took inhaler instead of albuterol neb, with doc's Ok. .
I am not as stringent as you at home and don't double sanitize my neb cups. I rinse and use Bololo, which I love for simplicity. The doc from NJH said in lecture posted a few days ago that both it and the Mandela bags work.
In that trip, I had to sanitize a sinus rinse bottle and spacer and took a collapsible bowl. I also happened to throw in a small thermos bottle. That paid off- one hotel didn't have a hot pot in room or microwaves available, but was happy to fill thermos with boiling water from kitchen. I'd soak equipment in soapy water then rinse in more boiling water.
I did fine during trip, but got sick with Covid 2-3 days after I got home. I wore masks, so don't beat yourself up.
I blame it on a long layover and too many people.
In states, I use microwave Mandela sterilizing bags for road trips and take a lot or bowl to wash it or rinse it before .

I wonder if the new new med would help you. Good luck with traveling. Stay well.