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@irene5

I doubt they will have you start the Big 3 again. I mean they might but hopefully not. I’m glad your pulmonologist and ID doctor are in sync. That’s how it should be!! So I am unable to do any of the nebulizer stuff or a vest for many reasons - mostly because I am too fragile (pronounced fra Jill ay ) like in A Christmas Story! Lol. The Arikayce is a different process . It has a kajillian steps but it’s like riding a bike. Once you’ve got it - you’ve got it. And you can call your Arikayce person (you will be given an Arikayce coordinator) at any time. You can also call Panther Pharnacy with questions as well. You are given a nurse who goes over it with you step by step the first time. The sterilization involves a particular kind of soap and you can use only distilled water for the process. Each piece has to be rinsed , washed, sterilized and then dried on an Arikayce mat and covered with an Arikayce towel!:). I counted the seconds for each piece and used Alexa to tell me when five minutes was up. Arikayce is inhaled using their equipment which is yours to keep. I think each medicine box contains a month of vials that you will keep in the refrigerator. It comes in a huge refrigerated box that you return each time. UPS comes and collects it. Easy peasy! It also has equipment to change out when necessary. It becomes easy - just time consuming, and they supply you with a journal to take notes. You need to do it when it is convenient for you. I did it at the end of every day when my work was done. For me that was at 8:30 or 9. I told my kids not to call during that time as I was doing my treatment. The only issue I had was after I had been doing Arikayce for a long time we got a GSD puppy so I had to put Simba in his crate while I did the treatment as he was a big distraction and very interested in what the momma was doing. I’m 73 years old and if I can do it you can do it. I don’t learn as quickly as I used to back in the day. Long story short - the Arikayce got rid of my MAC. It targets your lungs and bypasses everything the Big 3 hit on the way to your lungs. Wishing you only good things on your journey. Irene

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Replies to "I doubt they will have you start the Big 3 again. I mean they might but..."

Curious how long you've been MAC free after treatment?

Irene, we are having parallel experiences. After years of MAC, big 3, amikacin, arikayce, etc, I too was diagnosed with a fungal infection in 2022 after developing systems in March. I started voriconizole in November. Dr's at NJH want to preform lobectomy this year. I'm working on a 3rd opinion now. Also developed some recent tachycardia so a Cardiologist is scheduled in May. I'm trying to hold off until after May when I turn 65 and get Medicare. I also had a GSD for 14 years until last month, father time caught up to her. I miss her.