New Diagnosis of MAC/MAI & I'm scared

@irene5 Hi Irene! I hate that the covid put the skids on your arikayce. I would think it would be similar to the inhaled tobramycin treatment. That did not take anybody to show me the ropes on how to do it. Isn't it like nebulizing anything else like saline or albuterol? @heathert Heather, what do you have to say about it? If it is different, then couldn't you do it with a youtube video?

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@irene.....I had the high test...strongest flu shot available.....didn’t know I could get another shot......my doctor said that there are so many strains of flu out there and that each year they try to concoct the best vaccine based on what strain they think is most prevalent that year. They are doing what they say is the best to protect us but right now that protection is only 50%...better than nothing but not the best odds. . Let’s hope this new research energy and drive to find a vaccine for Covid will spill over into improved flu immunity....as we know more people the get the flu than Covid.

.

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@sounder27 Hi there! Did you have to have instruction in person by a healthcare worker to use your Arikayce? Is it different from nebulizing any other med? Thnx!

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I am newly diagnosed as well and because of Covid-19 have been sitting in limbo for 6 weeks with way too much time to think. Luckily, my husband found the site for me and I have taken their advice and educated myself by reading the old posts and using the resources mentioned. Sometimes, I find the posts alarming, however, I believe the benefit of arming myself with knowledge will benefit me in the long run.The videos from National Jewish Health have been particularly informative. As I wait for Dr. contacts and appointments, I am doing as much as I can knowing that I will most likely be too sick once I start the drugs. I am preparing myself for the worst and hoping that maybe I will be one of the lucky ones in terms of side effects. That said, I guess if I have to go through this, now is as good a time as any since it appears that those of us who make up the vulnerable population won't be getting out and around for a long time to come. I hope you consider using all the support and resources available and I wish you well on your journey! Nancy

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I have been on the meds for 8 months. I haven't had the nasty gut side effects. I do have ringing in the ears and I can't get to an audiologist because of COVID and my thyroid meds are messed up. My latest side effect is my white blood count is getting lower. My doctors are staying on top of it though. I have had numerous phone calls and a teleconference. I get monthly blood work still and I do have to go in a hospital which makes me nervous. We have many cases due to meat packing plants in our area.

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@sounder27 Hi there! Did you have to have instruction in person by a healthcare worker to use your Arikayce? Is it different from nebulizing any other med? Thnx!

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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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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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