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Please Share your MAC and Bronch Success Stories - However Small

Posted by Sue, Volunteer Mentor @sueinmn, Aug 22, 2021

Please tell us about anything you have done to keep the dreaded infections at bay, or improving your health/breathing/energy.

@thumperguy and @kathyhg - you have both told us good news lately, care to share?
Sue

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Barb | @1065408 | Sep 14, 2021
In reply to @sueinmn "Woo hoo! I'm happy today. I had my lung CT on Friday. 20 months off antibiotics..." + (show)
@sueinmn

Woo hoo! I'm happy today. I had my lung CT on Friday. 20 months off antibiotics and using 7% news. Report: No Progression of bronchiectasis. No evidence of infection. No cavities. Just the same opacity and calcification at December 2019.
Celebrating with a margarita!
Let's hear it for 7% news and airway clearance.
Sue

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Sue, that’s wonderful news. Congratulations!

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shs | @shs | Sep 14, 2021

I am so excited for you! I know you are enjoying every day!

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thumperguy | @thumperguy | Sep 14, 2021
In reply to @kathyhg "I have also made dietary and lifestyle changes that are smart and that I should have..." + (show)
@kathyhg

I have also made dietary and lifestyle changes that are smart and that I should have done years ago. I try to do cardio exercise every day and I walk a lot. I mostly avoid gluten and dairy (or have lactose free dairy if I have any); I eat very little meat; I avoid sugar and processed foods. Either mac or aging or a combination of things have left me with an overall aversion to meat, alcohol and coffee and some of the foods that aren’t good for me so that part has been really easy. I do miss a good glass of red wine with dinner and a cup of coffee in the morning though! I have come to enjoy the time it takes to nebulize every day. Like Don, I feel very fortunate.

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Kathy, there are lots of nutritional sins that exceed a glass of wine and a cup of coffee. If you want to indulge I’ll keep it under my hat. Promise. Don

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1 reply
yaggi01 | @yaggi01 | Sep 14, 2021

Wonderful news!! Thanks so much for sharing...it is encouraging for us all!!

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thumperguy | @thumperguy | Sep 14, 2021
In reply to @lannc "I was diagnosed with MAC in 2013. The colonization was incidentally found when I had a..." + (show)
@lannc

I was diagnosed with MAC in 2013. The colonization was incidentally found when I had a breast MRI. A bronchoscopy confirmed MAC; a CT confirmed bronchiectasis. The first 5 years I was asymptomatic so my ID Drs and my Pulmonologist decided not to treat me but to monitor its progress. I have had CTs and Dr visits every 6 months and some sputum tests but, since I don't cough anything up, I have not had many. Some sputum tests were positive; some were negative. The CTs showed some progression over the years but I was still asymptomatic - except I couldn't hike up a hill or walk up more than 3-4 flights of stairs without having to stop or sit down to catch my breath and bring down my heart rate. The CT in October 2018 showed new nodules and, for the first time, the radiologist suggested a follow up CT in 3 months. Then in December 2018, I coughed up blood. I wasn't coughing hard nor was I coughing for a long time. My Pulmonologist put me on 7 days of Zithromax and started me on Singulair and Symbicort (I don't have asthma or COPD). Since then my CTs have gotten better, then stayed about the same, etc. In January 2020 I had a major acid reflux episode and aspirated into my lungs causing inflammation in both lungs. For the first time my ID Dr said we may have to think about treatment. That is when I found the Mycobacterium Avium Complex/NTM Information & Support on FaceBook and learned about airway clearance. NO ONE had mentioned airway clearance to me - ever. I told my Dr that I wanted to try airway clearance before I start any meds. He kinda poo-poo’d it but said we could try. 6 months later my CT showed a huge improvement! Then my sputum sample in May 2020 was negative! And Woo HOO my last 3 sputum samples were negative as well!! And without meds! Airway clearance is and will be part of my daily life forever.

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Odd isn’t it Lannc, how often docs seem to step in a Cow patty. Don

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poodledoc | @poodledoc | Sep 15, 2021
In reply to @sueinmn "Woo hoo! I'm happy today. I had my lung CT on Friday. 20 months off antibiotics..." + (show)
@sueinmn

Woo hoo! I'm happy today. I had my lung CT on Friday. 20 months off antibiotics and using 7% news. Report: No Progression of bronchiectasis. No evidence of infection. No cavities. Just the same opacity and calcification at December 2019.
Celebrating with a margarita!
Let's hear it for 7% news and airway clearance.
Sue

Jump to this post

That's great news Sue. Could you tell us the date of your last positive culture for MAC? I assume it was before the time you stopped taking antibiotics. Bill

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 15, 2021
In reply to @poodledoc "That's great news Sue. Could you tell us the date of your last positive culture for..." + (show)
@poodledoc

That's great news Sue. Could you tell us the date of your last positive culture for MAC? I assume it was before the time you stopped taking antibiotics. Bill

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Actually, it was in December 2019, but we still discontinued the antibiotics because my body was no longer able to tolerate them, and the cavities in my lungs had improved. As of yesterday, my pulmonologist said she sees no reason to repeat the culture because the lungs are stable and I have no symptoms. She doesn't want to do it because I'm not producing much mucus and she doesn't see want to put me through a bronchoscopy.
Of course, with the cold and flu season coming, that could change...
Sue

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2 replies
poodledoc | @poodledoc | Sep 15, 2021
In reply to @sueinmn "Actually, it was in December 2019, but we still discontinued the antibiotics because my body was..." + (show)
@sueinmn

Actually, it was in December 2019, but we still discontinued the antibiotics because my body was no longer able to tolerate them, and the cavities in my lungs had improved. As of yesterday, my pulmonologist said she sees no reason to repeat the culture because the lungs are stable and I have no symptoms. She doesn't want to do it because I'm not producing much mucus and she doesn't see want to put me through a bronchoscopy.
Of course, with the cold and flu season coming, that could change...
Sue

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Your stable CT scan and no symptoms tells me the 7% saline and airway clearance is really working. My condition is very similar to yours so I am very happy to see your good results. Bill

REPLY
lora jo | @ljfoo | Sep 15, 2021
In reply to @sueinmn "Woo hoo! I'm happy today. I had my lung CT on Friday. 20 months off antibiotics..." + (show)
@sueinmn

Woo hoo! I'm happy today. I had my lung CT on Friday. 20 months off antibiotics and using 7% news. Report: No Progression of bronchiectasis. No evidence of infection. No cavities. Just the same opacity and calcification at December 2019.
Celebrating with a margarita!
Let's hear it for 7% news and airway clearance.
Sue

Jump to this post

I am so happy for you, Sue! We need to hear success stories like yours.

REPLY
kathyhg | @kathyhg | Sep 16, 2021
In reply to @thumperguy "Kathy, there are lots of nutritional sins that exceed a glass of wine and a cup..." + (show)
@thumperguy

Kathy, there are lots of nutritional sins that exceed a glass of wine and a cup of coffee. If you want to indulge I’ll keep it under my hat. Promise. Don

Jump to this post

Lol. I wish. It wasn’t exactly a choice to stop wine and coffee; I found that I couldn’t tolerate either one anymore. It’s been the strangest thing. I’m always looking for other indulgences though!

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