1. < MAC & Bronchiectasis

Watch and Wait Protocol?

Posted by greenly @greenly, Sep 10 6:47pm

I was recently diagnosed with MAC and bronchiectasis. I'm 66 years old. The only symptoms I have is a dry cough and shortness of breath during exercise. A CT scan of my shoulder showed something of concern in my right lung. This led to a pulmonologist and lots of tests. I don't feel sick at all. Yesterday was my first appointment with the infectious disease doctor. He agreed that I could take a "watch and wait" approach before starting the medication regimen. He's going to see me in six months unless I need to see him sooner. Just wondering if anyone else is "watching and waiting"...

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blm1007blm1007 | @blm1007blm1007 | Sep 12 12:22pm
In reply to @suzyqueue "I do still have a cough but its not like it was in the beginning. Now..." + (show)
@suzyqueue

I do still have a cough but its not like it was in the beginning. Now that I've been treating this, I'm much better than I was in the beginning and the first 2 years. The meds have kept me stable and have given me improvement. Its not worth the risk to me to watch and wait since the damage is so much worse than any side effect from meds.

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If the med's would/will stop the constant need to clear my throat I'd chance taking the med's. This constant need to clear my throat, as I have said, is especially bad after eating and drinking (water). Because of that I have not been as social as I would like, and truly hardly at all. and that is not healthy either. So I will see what the Tyler, Tx doctor visit, latest culture test and CScan test have to say and reveal.
Thanks for your replies.
Barbara

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greenly | @greenly | Sep 12 6:13pm
In reply to @busybeans "Watching and waiting for 13 years...it's do-able. And while my NJH doctor would rather I have..." + (show)
@busybeans

Watching and waiting for 13 years...it's do-able. And while my NJH doctor would rather I have part of my left lung removed, he's willing to listen to what I know about my body - mainly that two trials of the Big 3 left me a mess and unwilling to take them (I do understand that some folks have great success with those drugs. I just wasn't one of them). And I agree, do the healthy things, nebulize, exercise, and eat a healthful diet.

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Thank you for sharing your experiences! I wish you all the best.

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greenly | @greenly | Sep 12 6:15pm
In reply to @tcd518 "Greenly, is part of your "watch and wait" protocol daily airway clearance and nebulizing with (lev)albuterol..." + (show)
@tcd518

Greenly, is part of your "watch and wait" protocol daily airway clearance and nebulizing with (lev)albuterol and saline? For many of us, these are the foundation of our treatment, regardless of whether we take medication. Both bronchiectasis and MAC are progressive, so it is important to interrupt that progression! Best of luck.

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Right now it's just using the nebulizer with albuterol. Thanks for sharing!

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greenly | @greenly | Sep 12 6:18pm
In reply to @suzyqueue "Upon my diagnosis and while "waiting" for cultures and results, I formed a 10 cm cavity..." + (show)
@suzyqueue

Upon my diagnosis and while "waiting" for cultures and results, I formed a 10 cm cavity in my upper left lung within 30 days. The doctors that specialize in this disease and on the video from http://www.aboutntm.com suggest treating asap. Once the damage starts, its almost impossible to reverse. Once I added inhaled Arikayce, I was able to shrink the cavity to 4 cm but that's the best its gotten in 6 years...........all because of waiting.

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This is very helpful to know, and it definitely gives me more to think about and consider. This is all so new and bizarre to me!

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1 reply
greenly | @greenly | Sep 12 6:20pm
In reply to @tcd518 "Greenly, is part of your "watch and wait" protocol daily airway clearance and nebulizing with (lev)albuterol..." + (show)
@tcd518

Greenly, is part of your "watch and wait" protocol daily airway clearance and nebulizing with (lev)albuterol and saline? For many of us, these are the foundation of our treatment, regardless of whether we take medication. Both bronchiectasis and MAC are progressive, so it is important to interrupt that progression! Best of luck.

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Thank you! All the people sharing their experiences is so helpful!

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suzyqueue | @suzyqueue | Sep 12 6:25pm
In reply to @greenly "This is very helpful to know, and it definitely gives me more to think about and..." + (show)
@greenly

This is very helpful to know, and it definitely gives me more to think about and consider. This is all so new and bizarre to me!

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It is bizarre! It can be so different for each of us.

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Rick | @rstel7272 | Sep 13 7:19am
In reply to @suzyqueue "Upon my diagnosis and while "waiting" for cultures and results, I formed a 10 cm cavity..." + (show)
@suzyqueue

Upon my diagnosis and while "waiting" for cultures and results, I formed a 10 cm cavity in my upper left lung within 30 days. The doctors that specialize in this disease and on the video from http://www.aboutntm.com suggest treating asap. Once the damage starts, its almost impossible to reverse. Once I added inhaled Arikayce, I was able to shrink the cavity to 4 cm but that's the best its gotten in 6 years...........all because of waiting.

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I never had an option to wait, once I was diagnosed the 3×6 cavity had formed along with scar tissue. It's been the same size for 6 years.

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1 reply
suzyqueue | @suzyqueue | Sep 13 7:24am

It's a good thing you didn't wait. I'm convinced it would've gotten bigger. Are you doing the inhaled Arikayce?

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1 reply
lorifin777 | @lorifin777 | Sep 13 7:25am
In reply to @busybeans "Watching and waiting for 13 years...it's do-able. And while my NJH doctor would rather I have..." + (show)
@busybeans

Watching and waiting for 13 years...it's do-able. And while my NJH doctor would rather I have part of my left lung removed, he's willing to listen to what I know about my body - mainly that two trials of the Big 3 left me a mess and unwilling to take them (I do understand that some folks have great success with those drugs. I just wasn't one of them). And I agree, do the healthy things, nebulize, exercise, and eat a healthful diet.

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How do you nebulize?
What is saline treatment ty

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lorifin777 | @lorifin777 | Sep 13 7:30am
In reply to @rstel7272 "I never had an option to wait, once I was diagnosed the 3×6 cavity had formed..." + (show)
@rstel7272

I never had an option to wait, once I was diagnosed the 3×6 cavity had formed along with scar tissue. It's been the same size for 6 years.

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I have many cavities in chest. After meds from idc first CT scan improved 80 percent. However meds are expensive and disrupt your body functions. Azithromiacin stops me from taking meds for rheumatory arthritis which is severe debilitating.

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