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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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@heathert, Heather .. will do! I am HOPING he says YES!! Wouldn't that be just great .. but truthfully after a careful reading it appears more for emergency rooms for sepsis etc .. like with my husband's case .. but I am STILL hoping! Hugs! Katherine
@decosmo, Rosie, I will be shocked out of my mind if the Aerobika doesn't help you!
Which is the best Airway Clearance method for Cystic Fibrosis? https://www.youtube.com/watch?v=Wn5o5AgD9m0
In it he talks about all the various devices that are helpful .. how to use them .. AND his favorite. After watching this video I now know I am wasting my time doing what I always thought was my "lung hygiene" FIRST .. THEN going to my Aerobika to get up MORE sputum! What a waste of time and energy! I need to go right from my 2 inhalers DIRECTLY to the Aerobika for the most effective "lung hygiene"! Man, we learn something new every day! Plus I learned .. since I am using the Aerobika at the max setting .. it might be smart for me to also have the RC Coronet which is a bit more demanding. I think I am going to order it today. I could switch off between the Aerobika or the Cornet depending on how much pressure I feel I need that day! Check out the video .. interesting info! Hugs! Katherine
Thank you Katherine. Watched the video informative and educational. Dr. Leventhal also suggested either the acapella or the aerobika. I was reading the contraindications and saw sinitus on the list. Hmmm, wonder if it will cause me issues. Another question for Dr. Leventhal. I am sure he is getting frustrated by now of my asking his staff to answer questions. LOL
@decosmo, Rosie, I would definitely do the Aerobika .. at least for me the Acapella did zero! Just my opinion. The Acapella has the dial feature so you have so many more options. Hugs! Katherine
@maryjo2sell, Mary Jo, after watching that youtube video and knowing I use the Aerobika at the max setting .. I thought it might be smart for me to try the RC Coronet .. would you mind sharing where you purchased yours .. the cost and if you are happy with it?
". I am also going to order another " toy" called the RC Coronet." Appreciate your help! Hugs! Katherine
@decosmo Rosie, I don't know if it would help you .. but below is my particular routine .. partly based on help from @lindam272 .. Linda .. change it around to fit yourself .. hope it helps a bit! Hugs! Katherine
INHALERS/LUNG HYGIENE
Below is my particular routine in using my Aerobika
1. use my 2 inhalers PRIOR to brushing my teeth
2. use a "huff" cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Then use the Aerobika device per the instructions. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. I have found using the Aerobika you are able to " pull" mucous out of those lower lung airways in a way you cannot without the device. Personally I do this twice a day.
3. using peroxide to dampen my toothbrush and toothpaste to brush (purchased a squirt dispenser for the peroxide)
4. rinse my toothbrush .. then using peroxide for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm
5. Use my Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com
@katemn, me too, maby in the future ,fingers crossed
Thank you, Thank you Katherine. I am so glad I found this site and you! Did not know about the expand a lung breathing fitness exerciser. Another apparatus to buy. I am all for increasing lung health through minimal medication when possible.
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1 Reaction<br><br><br><br><br>Thank you for thinking of me. I had heard and read about this kind of stem <br>cell therapy. From what I understand, it is a hoax that bilks people of their <br>money. I was told this by Mayo doctors, but not in those exact words. Who knows, <br>it might actually be legit. That therapy is extremely expensive and insurance <br>does not cover it. (there are clinics in Florida that offer it too). I am <br>holding out hope that they will be growing lung tissue from our own body to <br>transplant in the future.<br> <br><br>
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2 Reactions<br><br><br><br><br>Hi. I know that the Mayo is experimenting even as we speak on stripping <br>down donor lungs to their main structure; and then taking growth/lung cells? <br>from your own body and growing them over the structure. That way you are less <br>likely to reject the lung. That is 5-10 yrs or more out though. <br> <br><br>
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