New Diagnosis of MAC/MAI & I'm scared

I too had that burning sensationfor several yrs. I was worried that I had cancer or something, but it turned out to be acid refux. My esophagus was so burned by my own gastric juices coming up my throat at night. Once I got the reflux under control, the burning went away and my esophagus healed. While going through it; I thought it was my trachea that was burning, but it wasn't.

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Hi! I thought it was just me but now I know. I had burning and discomfort in my chest for months..it was reflux and it made me so sick on my stomach also. It’s scary because I thought it was my lungs too but I’m very grateful it was not. If I eat 3 hours before bed I’m ok if not I have to sit up or it will cause discomfort. And about the thumb does it have anything to do with our lungs? I have been having some horrible pains in my thumbs and it feels like I can’t use them at times. I thought it was RA. All the strange things in life. 🙂 hugs to all. Stay safe Rita.

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@america Not Terry, but about the thumb - As far as I know, thumb pain is not related to MAC or lungs. In my case it is arthritic deterioration - it has pretty much given my body fits for 30 years now. Hands, feet, hips, neck, back, now starting in knees and elbows.
Repair surgery is almost like annual maintenance for me...
Sue

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Hi Sue! Do you have RA? I do and it’s just been such an experience. Pain in my body and I can’t do most of the things I used to do. I am trying to do as much as I can because I love to keep myself going. I also have Sjogrens and 1 vocal cord so it difficult to swallow pills. That makes life harder for me because not all meds comes in liquids or some pills that really works I can’t crush. It’s good that we have nebulizers and some meds to inhale. I wish you all the best and so sorry about all your pains. Rita.

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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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@sue I wonder if so many have bad thumbs...which l have ...not only from osteoarthritis ….but the wear and tear of them over the years especially due to use of computers and smartphones/ipads???? tdrell

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Hi! I thought it was just me but now I know. I had burning and discomfort in my chest for months..it was reflux and it made me so sick on my stomach also. It’s scary because I thought it was my lungs too but I’m very grateful it was not. If I eat 3 hours before bed I’m ok if not I have to sit up or it will cause discomfort. And about the thumb does it have anything to do with our lungs? I have been having some horrible pains in my thumbs and it feels like I can’t use them at times. I thought it was RA. All the strange things in life. 🙂 hugs to all. Stay safe Rita.

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Hi Terri! That is what I was thinking. Between my laptop, and especially my cell phone; I feel like it could be the like what corporal tunnel does to wrists. I have been trying to dial back my electronic use.

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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.

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