New Diagnosis of MAC/MAI & I'm scared

Windwalker. The nebulizer machine for the amikacin is different. A little sleeker and smaller. There is no tube attached, but rather the 5 piece assembled “pipe” attaches to the nebulizer with a cord and attachment piece that has an electrical conducting element. The pipe itself has to be specifically assembled for every use. I feel a bit like the caterpillar in Alice in wonderland while I’m puffing away, inhaling, there is a mist that resembles smoke that swirls around as I inhale and exhale into the pipe. There is a bowl of sorts into which the amikacin is poured and then covered with a twist on top. Once the pipe is ready for use the sleek little machine is turned on with the press of a button. It is timed for about 20 minutes or so of inhalation and shuts off automatically when the liquid has been inhaled. After the inhalation process, the pipe is disconnected from the machine and you need to take it apart and carefully wipe each piece before bringing them to the sink to clean. You will need a medium sized bowl that you fill with a few drops of clear dishwashing liquid and hot soapy water. Carefully rinse each piece and put in the soapy bowl for about 5 minutes. Next, rinse each piece again and put them into a pot of boiling distilled water used only for them. Boil for 5 or 6 minutes. Now place each piece on a special lint free towel set on a drying mat and cover with the rest of the towel. Now your pipe is cleaned and ready to assemble for the next use. The metal element piece is replaced with a new one each week and the entire pipe is replaced each month. Those pieces are included in the packaging. The whole ‘shabang’ is delivered monthly in a refrigerated cooler and the packaging needs to be sent back via fedex. The meds have to be refrigerated immediately upon delivery.
I think I included everything in the process. It took me about a week to really learn the order of assembling the pipe and to remember to take the vial of amikacin out of the fridge an hour before use. It has to be room temperature before use. I hope this helps. It is easy for me now and I don’t think about it too much.

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Thanks for posting this. I never learned to use my thumbs for texting but even when not having to type with one finger, it's a long process to describe for those who never used Arikayce. I stopped Arikayce in December but I always felt that, after the cleaning/disinfecting procedure, the parts were as sanitary and safe as possible. I continue to do the whole thing, once a day, every day, for my neb cup and aerobika.

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Truthfully, I barely gave thumb texting a try. Thumbs are the fattest fingers and I couldn't see using them to type. To this day, I don't know how people do it!

As for Arikayce, I did not fit the protocol but my doctor wanted me on it anyway. I was diagnosed with MAC in Nov 2018, and started the big 2 (bad reaction to rifampin after 2 or 3 doses) in March 2019. My doctor prescribed Arikayce in June although I had less than the 6 months of positive results required. Perhaps the fact that I cannot give up the steroid in Symbicort influenced her decision. Insurance approved it and we were in the process of ordering it when my June sputum sample showed a deadly fungus (mucor). On July 1, I had a bronchoscopy looking for the fungus as well as MAC and neither showed up in the 8 biopsies. MAC also did not show up weeks later in the June specimen. Arikayce had already arrived and the home visit was scheduled so we went ahead. I think my doctor was surprised that the antibiotics, which only work for 40% of patients, worked for me so fast.

After only a few days, Arikayce triggered an exacerbation of my chronic bronchitis and I had to stop. By August, I was breathing better and my doctor told me to try Arikayce again but only 3x a week. I was ok until December when my breathing got really bad again and I stopped.

My July and August samples had also been negative for MAC so I'm due to stop the oral antibiotics in June, the first month of 3 months of negative samples. Sputum samples in October and January were also negative. I have an almost full month's supply of the very expensive Arikayce sitting in my refrigerator since December. My doctor told me not to use it.

When I started it, I was told that the nurse could meet me at the doctor's medical center if I wanted to be there instead of home. I don't know if that would work for you during this crazy time.

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Truthfully, I barely gave thumb texting a try. Thumbs are the fattest fingers and I couldn't see using them to type. To this day, I don't know how people do it!

As for Arikayce, I did not fit the protocol but my doctor wanted me on it anyway. I was diagnosed with MAC in Nov 2018, and started the big 2 (bad reaction to rifampin after 2 or 3 doses) in March 2019. My doctor prescribed Arikayce in June although I had less than the 6 months of positive results required. Perhaps the fact that I cannot give up the steroid in Symbicort influenced her decision. Insurance approved it and we were in the process of ordering it when my June sputum sample showed a deadly fungus (mucor). On July 1, I had a bronchoscopy looking for the fungus as well as MAC and neither showed up in the 8 biopsies. MAC also did not show up weeks later in the June specimen. Arikayce had already arrived and the home visit was scheduled so we went ahead. I think my doctor was surprised that the antibiotics, which only work for 40% of patients, worked for me so fast.

After only a few days, Arikayce triggered an exacerbation of my chronic bronchitis and I had to stop. By August, I was breathing better and my doctor told me to try Arikayce again but only 3x a week. I was ok until December when my breathing got really bad again and I stopped.

My July and August samples had also been negative for MAC so I'm due to stop the oral antibiotics in June, the first month of 3 months of negative samples. Sputum samples in October and January were also negative. I have an almost full month's supply of the very expensive Arikayce sitting in my refrigerator since December. My doctor told me not to use it.

When I started it, I was told that the nurse could meet me at the doctor's medical center if I wanted to be there instead of home. I don't know if that would work for you during this crazy time.

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@rits hi there, your post about Mucor caught my attention. One of my sputum samples returned Mucor a year ago, and the doctor was immediately concerned, but we didn’t pursue anything further since I didn’t have any other symptoms. He is hopeful, and fairly confident it was merely a contaminant. Weird, though, that they did a bronchoscopy on you and tried to go in and find it, and couldn’t. Do you know how many colonies of Mucor you got you cultured?

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@rits There is no way on God’s green earth I can text with my thumbs. One finger texting for me! And that’s about all that works on me these days. Interesting how so many of us have arthritis. This growing up thing is highly overrated! Why did you stop Arikayce? I was supposed to start two months ago but am on hold because of someone having to come into my home in the beginning. I’m “hoping” to start soon. Thanks. irene5

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@brigby Hello. I have never heard of mucor. Is that yet another organism that we can contract? I just scrolled down and saw where you posted what that is. I will Google it to learn more about it.

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