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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totty | @totty | Oct 23, 2022
In reply to @thumperguy "I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either ...." + (show)
@thumperguy

I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either . Spontaneous remission rocks. May all you guys and gals have equally good luck!

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Congratulations you lucky guy!
There’s great hope for tomorrow
for others!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 23, 2022
In reply to @thumperguy "I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either ...." + (show)
@thumperguy

I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either . Spontaneous remission rocks. May all you guys and gals have equally good luck!

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@thumperguy - I am not quite so brave as you. I got a great report from my pulmonologist, and my new asthma meds, my lungs are more clear than ever, and even my all-day shortness of breath has been reduced to "when I'm chasing kids." She said I'm in remission, gave me a "just in case" Rx for antibiotics to have in my arsenal as we hit the road next week, so I don't have to try to convince an ER doc or PA if I have a flare. And said "See you in one year for imaging & spirometry unless you get sick" - Woohoo!
But, I'm afraid to stop my intermittent saline nebs and daily Aerobika. Maybe if I make it through the Fall, usually a tough season for my lungs, I'll be more brave...
Sue

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Amanda Roe | @amandajro | Oct 23, 2022
In reply to @thumperguy "I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either ...." + (show)
@thumperguy

I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either . Spontaneous remission rocks. May all you guys and gals have equally good luck!

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Hello @thumperguy. You will notice I have moved your post into a previous discussion you stared on remission so that those following can more easily see your update. Happy to hear you are feeling well!

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bee1950 | @bee1950 | Oct 23, 2022
In reply to @thumperguy "I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either ...." + (show)
@thumperguy

I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either . Spontaneous remission rocks. May all you guys and gals have equally good luck!

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Great to hear Thumperguy! I am still quite hesitant like Sue to make any change to my routine. Twice daily neb with Aerobika after each. I believe the nebulizing with 7% sodium chloride has put an end to my hemoptysis which had become routine. A CT in Dec. & visit to my Pulmonologist in Jan. should let me know how I’m really doing but fortunately no symptoms now other than a small cough. So glad all your thumping, exercising & good eating have paid off! Take care Linda

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thumperguy | @thumperguy | Oct 24, 2022
In reply to @nana43 "Hi! So happy for you that you are symptom free!! No matter what we call it,..." + (show)
@nana43

Hi!
So happy for you that you are symptom free!! No matter what we call it, it must be glorious!
Such a mysterious illness that affects each person differently.
I don’t neb at all and respiratory symptoms for me are of much lesser degree than constitutional ( ie. fever, fatigue, weight loss, and overall feeling of unwell). My 6 month mark of treatment is upcoming and hope I can report “ remission”!

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Nana, how do you describe your diet and what it consists of?

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1 reply
nana43 | @nana43 | Oct 24, 2022
In reply to @thumperguy "Nana, how do you describe your diet and what it consists of?" + (show)
@thumperguy

Nana, how do you describe your diet and what it consists of?

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Food that consists of usually a smoothie in the morning , salad or sandwich at lunch and meat & vegetables in the evening. I do the flutter device at least once a day sometimes twice and I exercise 30 minutes every day. Which type of exercise varies depending on my energy level but still 30 minutes every day. Other than the big three antibiotic‘s, depression medication, HP medication and a probiotic daily; that’s it!

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sweethighland | @sweethighland | Oct 24, 2022
In reply to @nannette "@sweethighland I've always nebulized with 7% saline, nothing less. And my airway clearance has only been..." + (show)
@nannette

@sweethighland I've always nebulized with 7% saline, nothing less. And my airway clearance has only been lying on my back and I can clear my airways that way. I've never used a vest, just the nebulizer. I use to nebulize every day but now I do it every other day. I was diagnosed six years ago but have had no progression for the last four years and I attribute that to the saline solution and exercising six days a week to keep my lungs in shape (as prescribed to me by best friend who is a doctor and when she heard about my diagnosis six years ago she said I had to exercise every day so I did what she said. She's smart.) I did take the big three antibiotics six years ago for one year but I really don't want to do that again if I don't have to. Hope that helps. Nan

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Thank you Nan. Whenever I lay on my back, yellow mucus come up and then I cough up. Do you have mucus every day? I too walk 30 minutes every day. I have been coughing up tiny bit of blood mixed with mucus and i have stopped nebulizing at the moment and see if it is causing the bleeding.

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1 reply
nannette | @nannette | Oct 25, 2022
In reply to @sweethighland "Thank you Nan. Whenever I lay on my back, yellow mucus come up and then I..." + (show)
@sweethighland

Thank you Nan. Whenever I lay on my back, yellow mucus come up and then I cough up. Do you have mucus every day? I too walk 30 minutes every day. I have been coughing up tiny bit of blood mixed with mucus and i have stopped nebulizing at the moment and see if it is causing the bleeding.

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@sweethighland I use to have mucus everyday, yes. And whenever I mentioned to my pulmonologist office if I saw a tiny bit of blood they said stop the saline for a day or two so that's what I've always done. And I also had a chronic cough for four years after I got the 2018 flu and then one day I went to the emergency room (because I thought I was having a heart attack and I wasn't) and it turned out I had a very mild case of pneumonia ( I had been coughing a ton) so they gave me a 250cc bag of azithromycin in the hospital...it was half the size of one of those big iv bags...and then sent me home with a Zpack and on about day 4 my chronic cough stopped. I kid you not. A four and half year old chronic cough STOPPED. Now I cough just a little bit every now and then and now and my mucus has stopped production by probably 90%. Go figure. A serendipitous visit to an ER...And as I look back now, I once watched a three hour chronic cough conference by the European Lung Foundation about 8 or nine months ago and there was this one doctor from the University of Edinburgh (out of about eight doctors that spoke on the subject) and he said "I have had the most luck with Azithromycin (for chronic cough)"...so I thought at the time, wow, I wonder if that would work for me? And it did. All by accident. Sorry I kind of went of subject from your question but you had asked if I had mucus everyday and I had to tell the story. Nan

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2 replies
spider109 | @spider109 | Oct 26, 2022
In reply to @nannette "@sweethighland I use to have mucus everyday, yes. And whenever I mentioned to my pulmonologist office..." + (show)
@nannette

@sweethighland I use to have mucus everyday, yes. And whenever I mentioned to my pulmonologist office if I saw a tiny bit of blood they said stop the saline for a day or two so that's what I've always done. And I also had a chronic cough for four years after I got the 2018 flu and then one day I went to the emergency room (because I thought I was having a heart attack and I wasn't) and it turned out I had a very mild case of pneumonia ( I had been coughing a ton) so they gave me a 250cc bag of azithromycin in the hospital...it was half the size of one of those big iv bags...and then sent me home with a Zpack and on about day 4 my chronic cough stopped. I kid you not. A four and half year old chronic cough STOPPED. Now I cough just a little bit every now and then and now and my mucus has stopped production by probably 90%. Go figure. A serendipitous visit to an ER...And as I look back now, I once watched a three hour chronic cough conference by the European Lung Foundation about 8 or nine months ago and there was this one doctor from the University of Edinburgh (out of about eight doctors that spoke on the subject) and he said "I have had the most luck with Azithromycin (for chronic cough)"...so I thought at the time, wow, I wonder if that would work for me? And it did. All by accident. Sorry I kind of went of subject from your question but you had asked if I had mucus everyday and I had to tell the story. Nan

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Wow, Nan such a great story and advice. I too have mucus production 24/7. And that being said makes me cough all the time. I see my Pulmonologist tomorrow and will ask about it. Thank -you.

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spider109 | @spider109 | Oct 26, 2022
In reply to @nannette "@sweethighland I use to have mucus everyday, yes. And whenever I mentioned to my pulmonologist office..." + (show)
@nannette

@sweethighland I use to have mucus everyday, yes. And whenever I mentioned to my pulmonologist office if I saw a tiny bit of blood they said stop the saline for a day or two so that's what I've always done. And I also had a chronic cough for four years after I got the 2018 flu and then one day I went to the emergency room (because I thought I was having a heart attack and I wasn't) and it turned out I had a very mild case of pneumonia ( I had been coughing a ton) so they gave me a 250cc bag of azithromycin in the hospital...it was half the size of one of those big iv bags...and then sent me home with a Zpack and on about day 4 my chronic cough stopped. I kid you not. A four and half year old chronic cough STOPPED. Now I cough just a little bit every now and then and now and my mucus has stopped production by probably 90%. Go figure. A serendipitous visit to an ER...And as I look back now, I once watched a three hour chronic cough conference by the European Lung Foundation about 8 or nine months ago and there was this one doctor from the University of Edinburgh (out of about eight doctors that spoke on the subject) and he said "I have had the most luck with Azithromycin (for chronic cough)"...so I thought at the time, wow, I wonder if that would work for me? And it did. All by accident. Sorry I kind of went of subject from your question but you had asked if I had mucus everyday and I had to tell the story. Nan

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Nan, have you also been diagnosed with IPF/PF?

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