1. < MAC & Bronchiectasis

Did I make a terrible mistake? And what to do next?

Posted by yorkieyoli @yorkieyoli, Apr 10 4:43pm

I was diagnosed with MAC and bronchiectasis almost 3 years ago. It was suggested not to do antibiotics. The pulmonologist put me on albuterol and saline, but since I never produced sputum, and had no symptoms, she said to stop it after a couple of months. Fast forward almost 3 years, and I thought I better follow up just in case. I went for a cat scan and was devastated to find that it had spread to another lobe, and I have additional nodules. Did I make a mistake not being on the albuterol and saline all this time? She put me back on them twice a day. I'm about to go to an infectious disease doctor for the MAC. I still have no symptoms and feel good. Should I go on the antibiotics? I'm reading such conflicting things about it. I'm crushed and devastated. I'm in my early 50's and I still want to live a long time. I'm so scared šŸ™

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yorkieyoli | @yorkieyoli | Apr 11 10:21am
In reply to @egayle187 "I' m sorry to hear you are struggling with bronchiectasis and have no luck coughing up..." + (show)
@egayle187

I' m sorry to hear you are struggling with bronchiectasis and have no luck coughing up the mucus. Going to an ID doctor is the right move. I had MAC 11 years ago and have been free of it since taking the Big 3. They work. Do not be afraid of antibiotics. The infections can spread insidiously while you feel good. While I am able to get 95 % O2 with one dead lobe and another compromised, I would not suggest ignoring a specialist's advice. Since I was diagnosed, many more pulmonologists have become educated about it and more research is being done. You are lucky to have them available.
About your mucus. I use postural drainage, the flutter valve and nebulizer twice a day. I agree with @pacathy Good luck

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Wow! Congratulations on being MAC free for 11 years. That is awesome! I guess I will see what the ID doctor says and follow her advice regarding antibiotics. Your comment has made me feel less anxious about taking them

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yorkieyoli | @yorkieyoli | Apr 11 10:23am
In reply to @lvnl "You will find a lot of good support & info here. Besides the helpful comments already,..." + (show)
@lvnl

You will find a lot of good support & info here. Besides the helpful comments already, I would add to ask yr infectious disease doc about respiratory therapy (aka chest therapy). I was not productive until I had help learning how to do airway clearance.
I should also mention I've 6 mos in on antibiotics for MAC w minimal side effects & just had my first negative sputum :-). There are quite a few of us here being successfully treated.

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That is good advice! I will ask about chest therapy. Thank you!

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yorkieyoli | @yorkieyoli | Apr 11 10:25am
In reply to @mmahlik "So very sorry youā€™re experiencing this. Iā€™m new to bronchiectasis and MAC so Iā€™m experimenting with..." + (show)
@mmahlik

So very sorry youā€™re experiencing this. Iā€™m new to bronchiectasis and MAC so Iā€™m experimenting with different techniques. I have a small amount of sputum and itā€™s hard to get it up. Things Ive found super helpful: exercise brings up the most gunk. I got a rebounder trampoline and 15 minutes on it is not only fun and great exercise but brings up the most gunk! Something about the bounce really loosens it. I do it after Levalbuterol and saline. I also just got a compression vest through insuranceā€¦weirdest thing ever but it is really helping. I also double up on saline ā€¦two vials. Best wishes to you!!

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Thank you! I'm going to look into the rebounder. I can't seem to produce any sputum, so it would be great to find something that works

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yorkieyoli | @yorkieyoli | Apr 11 10:31am
In reply to @dispatchpat "daily airway clearance IS Treatment. Like flossing your teeth. Hydration, exercise, and avoidance of ... it..." + (show)
@dispatchpat

daily airway clearance IS Treatment. Like flossing your teeth. Hydration, exercise, and avoidance of ... it does get complicated, I must leave off from trying to state a complete list here. This group is phenomenal at educating about the diversity of patient symptoms, solutions and frustrations and successes. Like you I feel that approximately a third of my life is ahead of me, (though you could claim more)! Fear and anxiety is to be expected, and taking action to educate and advocate for yourself will help dispel the fear and anxiety. I am two and a half years into this and I am finally going to spend two weeks at National Jewish Health in Denver. I'm in the Medicare age group and so I believe the care will mostly be covered. They put together an intensive investigative two weeks of appointments covering many specialized components of this difficult complex of disease. I hope your quest for health will be amplified by being here in this extraordinary group.

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Thank you for your response. I am very sad that my pulmonologist told me to stop with saline nebulizer 3 years ago when I wasn't producing sputum. I wasted 3 years of airway clearance, and now the MAC spread to another lobe. Still, I can only go forward, and now feel I have to do everything possible to contain this. It sounds like National Jewish Health in Denver is the place to be! Wishing you full and complete health!

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Beejenigma | @beejenigma | Apr 12 8:54am

I strongly suggest to everyone to check out Dr Noah Greenspan's Ultimate Pulmonary Wellness program and 6 week self-paced 'boot camp' which helps coach you with whatever stage you are in at the time. He also has many invited drs, nurses, specialists of all kinds to speak. This is completely free. He also has many invited speakers come on to his zoom for free. Lots of top-notch experts. He also has support groups with hundreds on zoom. Long covid support, NCFBE, CF, ILD, PF, etc. http://www.pulmonarywellness.org. He will even take a look at your particular situation for free if you ask.

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notnancy88 | @notnancy88 | Apr 12 12:50pm

I was diagnosed with NTM m.simiae in early 2013. I had zero symptoms. My PFTs were great. My pulmonologist at that tine was an Army Fellow at the Pulmonary Clinic in BAMC. Fast Forward 11 years, the VA pulmonologist told me I was wise NOT to start the antibiotic regime when first diagnosed but was symptom free. I walk over one mile each day and lift like weights. I do airway clearance twice daily(Dr. Pamela McShane's Youtube video is a must watch) and faithfully use my Aerobika and my AffloVest.

REPLY
1 reply
bayarea58 | @bayarea58 | Apr 13 1:07pm
In reply to @egayle187 "I' m sorry to hear you are struggling with bronchiectasis and have no luck coughing up..." + (show)
@egayle187

I' m sorry to hear you are struggling with bronchiectasis and have no luck coughing up the mucus. Going to an ID doctor is the right move. I had MAC 11 years ago and have been free of it since taking the Big 3. They work. Do not be afraid of antibiotics. The infections can spread insidiously while you feel good. While I am able to get 95 % O2 with one dead lobe and another compromised, I would not suggest ignoring a specialist's advice. Since I was diagnosed, many more pulmonologists have become educated about it and more research is being done. You are lucky to have them available.
About your mucus. I use postural drainage, the flutter valve and nebulizer twice a day. I agree with @pacathy Good luck

Jump to this post

@egayle187 eleven years! Whoa! Congratulations! Itā€™s inspiring to hear these positive treatment outcomes. Thank you for sharing.

REPLY
bayarea58 | @bayarea58 | Apr 13 1:10pm
In reply to @mmahlik "So very sorry youā€™re experiencing this. Iā€™m new to bronchiectasis and MAC so Iā€™m experimenting with..." + (show)
@mmahlik

So very sorry youā€™re experiencing this. Iā€™m new to bronchiectasis and MAC so Iā€™m experimenting with different techniques. I have a small amount of sputum and itā€™s hard to get it up. Things Ive found super helpful: exercise brings up the most gunk. I got a rebounder trampoline and 15 minutes on it is not only fun and great exercise but brings up the most gunk! Something about the bounce really loosens it. I do it after Levalbuterol and saline. I also just got a compression vest through insuranceā€¦weirdest thing ever but it is really helping. I also double up on saline ā€¦two vials. Best wishes to you!!

Jump to this post

@mmahlik interesting about the rebounder. My gym has one, I am going to give it a try. It might not be a great fit with my arthritis but worth an experiment. Thanks for sharing.

REPLY
yorkieyoli | @yorkieyoli | Apr 13 1:36pm
In reply to @notnancy88 "I was diagnosed with NTM m.simiae in early 2013. I had zero symptoms. My PFTs were..." + (show)
@notnancy88

I was diagnosed with NTM m.simiae in early 2013. I had zero symptoms. My PFTs were great. My pulmonologist at that tine was an Army Fellow at the Pulmonary Clinic in BAMC. Fast Forward 11 years, the VA pulmonologist told me I was wise NOT to start the antibiotic regime when first diagnosed but was symptom free. I walk over one mile each day and lift like weights. I do airway clearance twice daily(Dr. Pamela McShane's Youtube video is a must watch) and faithfully use my Aerobika and my AffloVest.

Jump to this post

Wow! Your story is so inspiring! May I ask if you are symptomatic now, 11 years later? And did you begin the airway clearance back in 2013 when you were diagnosed? Were you already exercising at the time, or did you make that change after diagnosis?

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