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Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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Replies to "Pamela, I reposted this is MAC & Bronchiectasis as I saw it under "Harmonica Therapy" Posted..."

Thank you Katherine. No one has ever appreciated what I had been put
through when that happened. During that same procedure, that dr shoved the
tube down into my lungs hard and it jammed into the very bottom of my lung. (all
the while being held down by two males) I thought I’d go through
the ceiling.  That, after feeling like you are being suffocated from
the tube in your throat and cannot get air. My drs at the Mayo said that would
NEVER happen their facility. Thank God, because if I were to ever get that lung
transplant, you have to have a bronch every three weeks at first.

It was horrid.

@windwalker, Terri, I love the saying “When we KNOW better .. we DO better!” Terri, that is so true for each and every one of us. You have learned though our community how to be your own best advocate .. have educated yourself on our shared MAC disease .. NOW it would NOT happen to you .. but it is the past .. leave it there .. create happy positive thoughts in the hear and now because today will never come again .. tomorrow is not here yet! I am sending you a HAPPY Hug! Katherine

@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

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!

Hug received! Big squeeze back. Yeah, I am over that past experience. Just
will never forget it!

Hi Pam! We all understand your fear. I am just now getting caught up on
these posts as I have been out of town. I am sure you have gotten many answers
by now. 1) they DO sedate you or put you in twighlight for bronchioscopes now 2)
they have you inhale saline solution to induce sputem production and bring it up
for a culture. Please do not worry, they have come a long way in how they
do procedures these days. I even had a totally painless Blood Gas Test two
months ago! -Terri M.

Thank you, Katherine and Mary Jo! That does put it in perspective! Linda

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