What is your Top Question about MAC and Bronchiectasis?
Earlier this month, a "newish" member, @sisterpulse , posed a list of questions she has as a person recently diagnosed with MAC.
I promised to share the list, but then I thought maybe many of us have that one question we would really like answered, or at least for someone to point us in the direction of the latest treatment protocols or research.
I am hoping those of you who like to do a little research, including @pacathy , @scoop , @windwalker , @becleartoday and @rstel7272 will join me in finding the best answers.
See sisterpulse's questions in the next post.
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Yes, the time involved with all this is a drag. Any "shortcut" causes a little nag in the back of your mind about whether you should do that or not. The only shortcut I feel safe about so far is using daily use of a baby bottle sterilizer for steam sterilization and then drying after washing all the equipment. To me, boiling on top of the stove daily was just an added drag.
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2 ReactionsI do the same as you. I also walk 3-4 miles several times a week, play pickleball and use my elliptical for 2 miles daily. Usually exhausted at end of day. My pulmonologist says just keep moving and that is what I try to do.
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1 ReactionThank you Sue for the simple ‘cleaning shower head process’ it may help reduce any Mac re-infection?
At the moment the pseudomonas has reoccurred and I am having IV antibiotics via Hosp @ Home and colymycin via the nebuliser.
The NTM MAC 1 has had to take a ‘back seat’ for the moment.
The annual European Lung Foundation ( ELF ) patient conference on Bronchiectasis will be on Saturday 23 March 10.00 -16.00 ( Central European Time ) speakers on treatment, research etc
Best wishes and thanks for all your information for my new Be and Mac journey.
Sr P.
Is the life straw water bottle recommended to filter out mycobacteria avium complex? If not what do you recommend?
The Lifestraw company also makes pitchers in two sizes. They have 2 different filters. They are .2 micron. They are recommended, and changing the filters is easy. I would use the Lifestraw brand, not similar substitute filters.
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2 ReactionsHi Sue,
I read a random comment on the trial thread that you had mentioned plain guafenesin works better than the 12 hour release brand. I can’t find that discussion but would appreciate being pointed in the right direction.
Thanks @crepass
That would not have been me. I have always used the time released type. Perhaps you read "plain guaifenesin" by which I meant with no added ingredients like decongestant or coughed suppressants.
There may be others who use the rapid release version, I can't be bothered with taking it 4-5 times a day.
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1 Reactionthanks, I appreciate your feedback on that.
Cindy
Has anyone with bronchiectasis and Mac had cataract surgery. I’m worried that using my Aerobika to get rid of phlegm will put too much pressure on my eyes and cause a problem after surgery. I haven’t had the surgery yet I was just wondering if anyone has had the surgery and how they managed getting rid of the phlegm. Also I’m not on any antibiotics for the MAC but was wondering if I had to start the medication for Mac plus have cataract surgery how does that affect the antibiotics I would need after cataract surgery.
I had two cataract surgeries last year. I just put the Aerobika away for the first 5 days each time and did gentle huff coughing. It worked fine.