need help: how to cut back time spent managing BE and MAC
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
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@mjb24 Thanks for sharing your tactics. I also use 2 Aeroclipse nebulizer cups and soak them in dishwashing soap, followed by sterilizing in a baby bottle sterilizer.
I feel your pain. Here are a few things I have done over the last 12 years. 1)Airway clearance: I use my vest on days I can’t do some aerobic exercise that accomplishes the same thing: for me, that is cycling a minimum of 7 miles or walking 30 minutes. (Due to past injuries, I am a pathetically slow walker.) I don’t know what shape you are in, but if you can exercise, that kills two birds (clearance and exercise) with one stone. 2) Do you really need all the hearing exams? I resigned myself to hearing loss due to Tobramycin years ago. My ENT. said it would happen no matter what (it has not been nearly as bad as he predicted), so why bother? 3) I asked my pulmonologist for something I could use on days, especially evenings, when the nebulizing thing was too much of a burden. He gave me Dulera, which I use on average once or twice/week, and more when traveling if I am not experiencing an exacerbation or otherwise feeling well. 4) I bit the bullet and bought a Pari eRapid nebulizer. That sucker is fast and easy to maintain. Nebology has great prices and sales. (I got mine for $700 or so.) Nebulizing 4 vials and sanitizing usually does not take more than 35 minutes. 5)Talk to all your doctors about the time suck. I have it down to less than 24 waking hours/wk when I feel good. (I am counting an average exercise load of 1.5 hr a day, though when time permits, I do a lot more— it has great mental and physical benefits. I could probably cut back without hurting my lungs. I wish more people would complain to their docs about it. Mine often come up with alternatives when I say I need to cut down the time. Make sure they explain why they need all the tests & appointments whose value you question. 6) Again, exercise. When you can, stairs instead of lifts, swimming, biking, golf without a cart, when your spouse or partner is boring you with shopping, walk around the mall, parking lot or street, and wear an Apple Watch, Garmin, or something else that will give you meaningful info about your progress.
@spectrumcyclist
You are so right about the exercise! Both exercise and airway clearance have done wonders for me. I've always been active in some form or fashion anyway, but really stepped up my exercise game, plus dogged, relentless airway airway clearance has totally changed my status with this disease.
@spectrumcyclist
Nebulizing 4 vials? What does that refer to?
@spectrumcyclist Given that you exercise 1.5 hours a day, do you also nebulize saline on the days that you exercise?
@irenea8 Little plastic things with the meds; ampoules, if you like.
@spectrumcyclist
4 of saline? At one time? That is alot! Why so many?
4 different meds, not just saline.
@spectrumcyclist
Wow! 4 different vials of meds at each session! No wonder you love that new nebulizer!