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Thu, May 16 8:06am · Arikayce in MAC & Bronchiectasis

It has to go through a specialty pharmacy. Go to the Arikayce website. They have the forms there and phone numbers to contact support to help you through the process of getting this prescribed.

Thu, Mar 14 7:48am · health at diagnosis in MAC & Bronchiectasis

How did they diagnose you? Sputum tests? Bronchoscopy? How were the "cultures" taken? You have several issues that could make your lungs vulnerable I would think. I didn't have anything but a thyroid issue when I was diagnosed with MAC. Within 2 months it created a hole/cavity in my upper left lobe of my lung that was 10 cm big.

Thu, Feb 21 9:01am · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

I had a clear CT scan and chest xray in May. 4 months later I had a cavity/hole the size of 9 cm in my upper left lobe of my lung.
I wouldn't play roulette with this disease for a second.

Wed, Feb 20 1:59pm · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

I do the treatment every night and sterilize after every treatment.

Wed, Feb 20 12:13pm · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

@tinaesims – I use distilled water and literally boil it for my Amikacin equipment. It's what the nurse and others in the program instruct to do. If on vacation or somewhere inconvenient, I think some use hot plates

Wed, Feb 20 9:54am · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

@brigby – Only if I could fit in gym time in the morning….oh and the energy LOL! I usually go to the gym after work around 5:30 or 6:00 and weekend afternoons. This really does require everything you said. I remember my doctor saying that the nebulizing is just "a pain in the butt" and I thought "how big of a deal can it be"? LOL! One I got into routine it wasn't so bad. Adding the Amikacin treatments to my day and all that has to be done with sterilization etc with it is another story….again – once in routine not so bad.

Wed, Feb 20 7:36am · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

Sometimes the Albuterol makes me shaky so I'll take a low dose of Xanax to keep me calm. But then I'm pretty relaxed, still groggy from nights sleep and can take an hour or so nap before I have to get up. LOL! Also, I have to do these every 12 hours so if I do my next one at 4:00 in the afternoon, I can do my Amikacin treatment a few hours later at a convenient time before bed. Doing the Albuterol and Saline solution a couple/few hours before Amikacin allows everything to be cleared out of my lungs and opened up to make it easier for the Amikacin to get in there deeper.