Knocking on Wood

@jr2366 Hi Jennifer I know how you feel, were you congested before the Amikacin. I have trouble getting phlem up also. Arikayce is good at its job, you can also get some other basic antibiotics from your Dr for if you catch a cold, take them straight away. I had whooping cough not long ago and was terrified but it all went smoothly, just lots of coughing and some phlemmy chest but no worries so I think we are tougher than we think. take care Heather

Gina I read your message from Jan 23 again your right in point about all that you wrote I’m currently in Arikayce and it’s been 2 months now I’m ok just very congested in my chest with cough seems it’s hard to get my phone up I try everyday it’s so annoying I hear wheezing and feel it too. I do huff coughing doesn’t seem to help much. I do get the night sweats and all you mentioned I do some walking for exercise mainly on my treadmill in the winter. My biggest worry is will my Arikayce medication work and get rid of this and if one day a catch a cold or get sick my lungs are already congested will I be able to handle a cold . This is all so new to me and I’m scared not going to lie thanks for reading this and taking the time

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

@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

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.

How 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

@windwalker ...Terri, I so hope it helps for you...sorry to hear of your current issues. I recently got a great thought from Heather...she was wondering if breathing our saline deeper into the lungs would get to her issues in her lower lobes. I tried deep belly breathing and holding it in for a count of ten. What a difference in getting up gunk. After a month of that...It now seems that there is nothing left to get up. If you try it, I would be curious to see if it helps. I love this site and the thoughts and suggestions that are raised here. Hugs and my best to you. Kate