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Knocking on Wood
Allowing for the possibility that I'm out-of-my-tree and totally deluding myself, at the moment I'm awash in self-congratulation. I'm closing in on 16 months without a flare-up requiring antibiotics to tame. I've tweaked the twice daily treatment session so that I get it done in 23 minutes not counting clean-up time. Twenty-three minutes nebbing 7% saline, switching on the Thumper for only the final three minutes. By that time the saline is almost entirely gone. Somehow those 7 minutes render the whole experience less oneous. Don
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I wasn’t as congested but definitely more on Arikayce, I made another appt this month with another dr in Manhattan to see what eles I can take for the phlegm to come up for me and what other asvice or meds I need to take perhaps. Thanks for your advice makes me feel little better we all need that. I just want to know can we live a normal life I know our lungs are the problem but will I be able to one day be medication free that’s my question and I will ask that when I go to dr soon thanks heather
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1 Reaction@jr2366 Hi Jennifer, are you also inhaling the saline with the nebulizer? I know that helps loosen up the mucus so it’s easier to cough out. There are different percents; .09%, 3%, 4%, 7%. I think you can buy the .09 without a Rx. Some studies show that 7% helps protect against the NTM infection as it makes the lungs inhospitable. But any % will help loosen the mucus. Also, drinking lots of water and staying hydrated helps. Some of us drink Breathe Easy or Clear Lung tea to help loosen mucus. Luckily, I haven’t had to take any antibiotics yet. I just continue to nebulize the 7%, stay hydrated, exercise (although not as often as I should, lol), and make sure I do my lung clearance with the Aerobika 2x per day 50 breaths each time. Hopefully, this won’t change any time soon. I’m waiting for my results from my last sputum test 2 weeks ago.
Gina
@jr2366 What Dr are you seeing in Manhattan? (I’m sorry if I already asked you that question). I’ve gone to Dr. Kamelhar. He’s affiliated with NYU. He is involved in research on NTMs. I try to see him at least once a year. I’ll make an appointment as soon as I have my latest sputum results.
Hi Gina I’m definitely going to look for this tea thanks so much and yes I’m going to mention to my dr about the saline I feel I could definitely use the help with loosing up the phlegm fir sure I get nervous with that I also hear and feel the wheezing it drives me nuts. I you tube how to huff cough so I’ve been trying that as well sometimes it helps other times guess I’m not that great at it. I will increase my water drinking too that may help little. Glad your doing the saline as well keep me updated on how your doing as well how long have you been doing all this and have Mac thanks so much really for all this helpful info
Well Gina I tried getting an appt with dr Adrizzo however yesterday they told me they are not taking new patients so they gave me another dr Mona bushar at NYU however I do have a pulmonologist here close to home as well but I just want another opinion and see what she can do for me as well I hope see she has good ratings
Have you tried positional drainage? I sometimes do that after the saline neb if I am having trouble loosening the mucus and getting it up and out. Works quite well.
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1 ReactionHow do you do this I never heard of this positional drainage thanks Beth
@jr2366 Beth, I am not an expert on anything and you can just google postural drainage and it will probably show you positions that you can lie in but I personally use postural drainage to clear my lungs and I don't have to use a vest or any device. It also has to do with people's physiology. Personally, I can just lie flat on my back, wait a minute or two and do a strong huff cough a couple of times or three short ones and clear my lungs. It takes a good 5 to 10 coughs for me personally. And then I go in "for the kill" afterwards with my saline solution and nebulize (because I truly believe that saline solution is key). Some do the opposite. Some do their saline first to break up the mucus and then clear their airways....I just happen to do it this way but it works great for me. Nan
Thanks I’m definitely going to try this however I do not have the saline in going to ask my doctor soon if I can get that as well you are very helpful I appreciate it thanks so much at this point I need anything that will help
@alleycatkate I hope this isn’t a silly question, when you talked about your deep belly breathing, I’m assuming this is done separate from using the nebulizer? Is this a technique I can google? Thank you!
Glenda Moseley