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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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<br><br><br><br><br>I have been grieving this chronic illness off and on over the years. I <br>have been on total disability since 2007 at the age of 49. My new way of looking <br>at is that I am having my 'retirement' years sooner than everybody else. I have <br>had many good days along the way that I enjoyed travels etc. or just feeling <br>decent. Many healthy people sometimes aren't lucky enough to live to see <br>retirement. Anyway, that is my way of dealing with the cards I have been <br>dealt.<br> <br><br>
@lindam272, Linda I am going to quote one of our Members because I just LOVED it .. I felt SO strongly that it brought SANITY to this subject .. I am going to quote it CONSTANTLY because it makes SO much sense for all of those with MAC! Again, thank you @maryjo2sell .. Mary Jo !Hugs to you Linda and all! Katherine
I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo
Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live.
p.s. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!
<br><br><br><br><br>Hug received! Big squeeze back. Yeah, I am over that past experience. Just <br>will never forget it!<br> <br><br>
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1 Reaction@windwalker, Terri, you are such a cutie! What a great attitude .. choosing to see it as having the "option of early retirement"! I totally agree .. how we "see" our lives is what "looking glass" we choose. I was once told my "problem" was that I "chose" to see a 1/3 full glass as a full glass. My response was that was perhaps my survival tool for a pretty tough life. It has gotten me to a pretty darn successful point in life that I don't think anyone would have predicted frankly if they knew the whole "unpretty" picture that few know. I'm only telling you because most people only judge from the outside .. never knowing our "story". Here on our Forum you have been so honest about your story that few people probably know in your life .. I applaud your strength, courage and honesty .. lack of self pity. I am proud to know you. Hugs to you! Katherine
<br><br><br><br><br>Wow Katherine, I am touched! I feel the same way about you!<br> <br> <br><br>
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1 Reaction<br><br><br><br><br>Steve, see if your dr will put you on tobramycin. it is the ONLY drug that <br>stopped my constant coughing. I have COPD along with bronchiectasis and MAC. I <br>know of the hard coughing you are experiencing. I have probably pulled every <br>muscle in my body and lost bladder control from the pressure of such <br>cough. These things have all cleared up and I feel like a new person. <br>I rarely cough any more. I have been touting the benefits of tobramycin on <br>this site; but I want you all to know I am specifically aiming it at people who <br>cough constantly. The damage that coughing can do is almost as bad as the <br>disease. This med is insanely expensive, but there is charitable help out there <br>to help pay for it. One member on this site said she paid $1,000 in co-pay(s). <br>She said it did the trick and was worth every penny.<br> <br><br>
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1 Reaction<br><br><br><br><br><br>Hi Mary Jo, so glad you had a good experience at the Mayo. I too do the <br>nebulized saline and albuterol. I feel like the saline has been helping. I would <br>think it would cause an inhospitable environment for most things that like to <br>infect us as well as help us clear the lungs.<br> <br><br>
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1 Reaction<br><br><br><br><br>Gosh Jen, I feel for you! Pray you feel better soon. -Hugs to you! Terri <br>M.<br> <br><br>
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1 ReactionDear All, just found a really neat website that I'd like to share .. check it out and maybe incorporate some of it into your life? I really liked it! Hugs to all! Katherine
New Year’s Resolution Challenge: Cultivate Mindfulness .. be sure to click one the 4 items in blue
We challenged you to cultivate mindfulness through:
Morning Gratitude
Yoga
Meditation
Self-Compassion
https://connect.mayoclinic.org/discussion/live-qa-new-years-resolution-challenge-cultivate-mindfulness/
<br><br><br><br><br>Hi Pam! We all understand your fear. I am just now getting caught up on <br>these posts as I have been out of town. I am sure you have gotten many answers <br>by now. 1) they DO sedate you or put you in twighlight for bronchioscopes now 2) <br>they have you inhale saline solution to induce sputem production and bring it up <br>for a culture. Please do not worry, they have come a long way in how they <br>do procedures these days. I even had a totally painless Blood Gas Test two <br>months ago! -Terri M.<br> <br><br>
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