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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
@anniepie Oh my goodness! You need a whole lot more than being told to watch a video. Call Panther pharmacy and see if they can send you an online nurse to walk you through it! If not I will send you my number privately and walk you through it myself. So sorry! I was a wreck even with the nurse. It took me two hours of an online tutorial with a nurse. She was sooo patient. @irene5
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Thanks so much Irene @irene5. Yes I've really had the 'wobbles' about all of this. All the warnings on the website I was given and the video freaked me out about the 'common' side effects.
Just trying to deal with all of this MAC/MAI stuff alone can be really tough. (I really sympathise with anyone in this forum who has to deal with this alone and lives alone).
When I don't get adequate support from some medical specialists it all falls down -- that happens too much unfortunately. I wish I had the nursing help you mentioned in Australia where I am, but I don't,
I've now ordered a personal medical alarm etc -- because there is nobody around if I have any bad side effects with anything. I won't start the Arikayce until I've got that all in place.
Thanks so much for your kindness. Hugs from Annie x