Badges (1)


Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (114)

Tue, Jun 23 4:31pm · Missing a dose? in MAC & Bronchiectasis

BlueSplashGirl. Be careful not to double dose. I’ve forgotten meds before like that and I called my pharmacist right away and he advised me not to take the meds twice on same day…in other words space out the time from the dose that you took when you remembered until you can get back on track. I hope that helps??

Mon, May 4 10:35am · Nebulizing Equipment in MAC & Bronchiectasis

auntnanny. Arikayce is a liposome antibiotic Amikacin that is specifically for MAC. Because it is delivered as a liposome, it is delivered directly to the receptors in the lungs and it bypasses the systemic type of reaction that would naturally occur if one was taking oral meds or even intravenous meds. That is why it was recommended for me because of heart rhythm condition that I have. This medication still has many side effects for which it needs to be carefully monitored, but thankfully heart rhythm is not one of them.

Fri, May 1 9:51am · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

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.

Fri, May 1 9:45am · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

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.

Thu, Apr 30 8:42pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Laura34. I will definitely post my ct results. I am hoping for great improvement since my coughing has quieted down and I am not producing much mucus anymore.

Thu, Apr 30 7:00pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Laura34. I have been taking the Amikacin/ Arikayce since last October. I have been taking it every other day with literally no side effects. At the daily dose I began to loose my voice so my pulmonologist changed me to every other day. I am not on the big 3 because 2 of those drugs affect my heart rate adversely and my doc felt I was not able to tolerate them. I was scheduled for a ct in June but doc has said we will wait until August because of the corona virus. At last ct scan I have nodules and 3 cavitation lesions

Fri, Apr 24 8:57pm · Virtual Tours: My plans to lessen the stress of quarantine. Yours? in COVID-19

Macjane. Yes in Rhode Island. I went to RISD. Down the hill from Brown and even took a few classes at Brown. East side of Providence has many historical houses and buildings.

Fri, Apr 24 8:42pm · Virtual Tours: My plans to lessen the stress of quarantine. Yours? in COVID-19

Macjane. It’s in Rhode Island. I spent many summer days there even when I was in high school. A lot of the high school students had summer jobs there.