1. < MAC & Bronchiectasis

Remission

Posted by thumperguy @thumperguy, Oct 8, 2022

Several months ago I reported going into remission from obvious symptoms of MAC and BRONCH. It’s been months since I last nebulized, even longer since using the percussion vest. Happily, still symptom free.I know we don’t generally speak of achieving “cure” more modestly speaking of “remission”. Probably splitting hairs, but curious about your thoughts on the topic. Clearly it’s not the word but the lived experience that counts. Don (Thumperguy).

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thumperguy | @thumperguy | Oct 29, 2022
In reply to @nannette "Hi Cheryl, I keep it varied because to be quite honest I hate to exercise but..." + (show)
@nannette

Hi Cheryl, I keep it varied because to be quite honest I hate to exercise but when my best friend, who is a doctor, told me I had to exercise everyday (she said this to me on the day I was diagnosed with bronchiectasis) to keep my lungs working I did what I was I told... 🙂 So I decided that I had to make it like brushing my teeth or eating. I HAD to do it no matter what. So on mornings when I really don't want to get up and get dressed and go to the gym or go walking I MAKE myself get up and do it. So I joined a gym (even though you could just walk regularly) and I take anywhere from 3-4 aerobics classes a week ( some with weights) for 45 minutes each time. It's about 40 minutes of work. On the other days I do a two mile power walk or walk very briskly for 30-40 minutes and that's a little over two miles for me. And then if it's raining or cold or I don't want to go anywhere I get on You Tube and find an aerobics class that I like. And then on days when I don't want to do any of that I just turn on my exercise music on and dance in my house. I always wear a Fitbit so I know what kind of workout I'm getting. I also look at this in a psychological way in that I feel like I'm telling my lungs that I'm in charge and I'm keeping those damn bugs out of there and trying to make it as inhospitable as I can for them. I don't want them setting up shop in my lungs. So I've been doing this for four years (diagnosed six years ago) and I've been in remission for four years. And I also do other stuff like take liposomal glutathione which is the single most important antioxidant in the human body (says my functional medicine doctor). As we age our glutathione levels drop so I just want to keep the levels up. I also take some herbs and other supplements that are supposedly good for the lungs and good for you in general. In a nutshell I just try and do everything I can to make my lung environment healthy. And of course, nebbing with saline solution! Hope that answers your question! Nan

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Nannette, I’m almost breathless just reading about your exercise drill. Hard to imagine doing more.

REPLY
Nancy C | @nac1 | Oct 31, 2022
In reply to @sueinmn "@thumperguy "Remission" is the word my pulmonologist uses too! But I have continued 7% saline nebs..." + (show)
@sueinmn

@thumperguy "Remission" is the word my pulmonologist uses too! But I have continued 7% saline nebs several times a week and habitual airway clearance twice a day (mostly Aerobika once a day & post exertion once a day) along with a different and much more effective asthma medication.

We shall see this week if I am still there.
Sue

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Sue, what do you do for airway clearance? I am not bringing up measureable sputum; but cough all the time to the point that my throat gets sore.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 31, 2022
In reply to @nac1 "Sue, what do you do for airway clearance? I am not bringing up measureable sputum; but..." + (show)
@nac1

Sue, what do you do for airway clearance? I am not bringing up measureable sputum; but cough all the time to the point that my throat gets sore.

Jump to this post

I have a variable routine, based on what is happening in my lungs & my life. To thin the mucus in my lungs, I use N-acetyl cysteine capsules (500 mg twice a day) plus long-acting guaifenesin (600 mg with no other additives twice a day) To open my airways and control my asthma I use Symbicort (actually the generic equivalent) 2 puffs 2-3 times a day. 20-30 minutes after Symbicort use a 7% saline neb every other day (up to twice a day during any exacerbation.) That sets off my coughing, so then I stand up & cough to bring up mucus. If it's not coming up, I bend over & cough - that usually does it. Or cough after a walk or some chair yoga. I use an Aerobika to vibrate my lungs too. I just had to replace mine for the second time, because keeping them clean with boiling causes them to get ineffective after a while.

Some days I bring up copious mucus, other days just a few drops.
What have you been doing for clearance?
Sue

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 19, 2023

@thumperguy, it's been a while since I've seen you lurking the halls of the MAC group. How are you doing? How's thumper?

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