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New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

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@sounder27

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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Replies to "Windwalker. The nebulizer machine for the amikacin is different. A little sleeker and smaller. There is..."

Windwalker. The arikayce team sends a registered nurse to be with each patient while they use the medication for the first time in case of a bad reaction and to carefully instruct in the whole process of assembling and proper usage. Nurse is wonderful and very informative. Also the Arikayce team follows up periodically to see if you are having any adverse reactions. They are always available via phone if you have any questions.

“@sounder27That is a very good and helpful explanation for me. You must have been in education! If not you would have been a good teacher. Thank you. irene5

@sounder the Pari Eflow is a fantastic machine. My Dr said she had a patient with a pari for 20 years and still going strong. I have one but diddnt realise it was the only machine for using Arkirice! We do not have that follow up and med delivery in New Zealand, thats fantastic.

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.