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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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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.
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2 Reactions@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.