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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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She is an Angel!
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1 ReactionBecky, Using a baby bottle sterilizer is way easier than the vinegar and water routine. I soak my equipment in soapy water for awhile, then rinse and put in the sterilizer. Microwave and done. Lay out to dry. My respiratory therapist suggested the bottle sterilizer. It's been a blessing for me! Linda
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1 ReactionKatemn....thinking of you and hoping the new medical course will conquer the vicious bugs....take care! Live terriD
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1 ReactionKatemn ...dang auto correct...that is love terriD
Can you put both the aerobika and the nebulizer in the bottle sterilizer? How long do you soak the equipment in warm soapy water before using sterilizer? When you clean before sterilizing, do you rinse in distilled water or do you use regular water? How often do you use the baby bottle sterilizer: every day after each use or once a week? Looking forward to your answers (sorry for so many questions) and thank you. Terry
That sounds like a good idea!
@irene5 My transplant center told me to wear a mask when flying but I have discovered on this site that many transplant centers do not insist on it. I don't believe that Mayo does. A close friend of ours who is a doctor said that masks do little to help because the germs flying around in airplanes are generally viruses and they are tiny and can get through the masks. I purchased some though that have an anti-viral coating so hopefully that will help. I would definitely recommend if a person is getting a mask for flying that they get an anti-viral one. I have no idea if they have them at all of the big drugstores but I bought mine at CVS.
JK
Terry - ask all the questions you want. That's how we benefit from each other. I sterilize the three main pieces of the aerobika once a week, the mouthpiece every day, but, yes, I do put it all in the sterilizer with the nebulizer parts. I soak everything (only do aerobika once a week as well, except for the mouthpiece which I wash and sterilize daily). Sometimes it's in there for an hour, sometimes for several hours. Just depends on when I get back to it. You are supposed to agitate when cleaning. I don't. I use hot soapy water and then rinse really well. I don't use distilled water. Just tap water. I use the baby bottle sterilizer daily. Here's my routine: nebulizer treatment, aerobika, take nebulizer parts and aerobika mouthpiece and soak all in hot soapy water. Later, rinse all parts well and put in the bottle sterilizer, microwave according to directions the sterilizer comes with, remove. I usually let it cool for a bit. Remove parts. Lay out to dry. Rinse/wash out sterilizer and let that dry. As stated, every Sunday, I wash and sterilize the rest of the aerobika. Not saying this is the "right" way but it works for me. I almost burned the house down a few times when I was sterilizing using boiling water and would forget I was boiling water on the stove. Geez! Like we don't have enough going on, right? Linda
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1 ReactionWhat a comprehensive, fabulous answer! Makes a lot much simpler. Thank you, Terry
Good advice. I guess it would depend then on what an individual is comfortable with for their own anxiety level or what their physician recommends.