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Longevity: I'm worried about rapid progression in lobes

Posted by jillcrawford @jillcrawford, Sep 10 12:16pm

PS does anyone have experience With later stage bronchiectasis and Mac. How long does it take to progress in general? Do you feel your treatment was actually beneficial If you are in your 70s or 80s
Does anyone know someone who has actually died from this illness thank you again

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blm1007blm1007 | @blm1007blm1007 | Sep 12 7:06pm
In reply to @jillcrawford "About two years ago, I was originally diagnosed with pneumonia in my upper right lobe, which..." + (show)
Profile picture for jillcrawford @jillcrawford

About two years ago, I was originally diagnosed with pneumonia in my upper right lobe, which eventually develop an abscess and necrosis

I have continued to have recurrent pneumonia’s and infections ever since then and finally was diagnosed with BE
A few months ago
Here’s my question
In one year, the BE spread from one lobe to three, which scares the hell out of me. Has anyone had a similar issue with rapid progression and how do you know it won’t continue at that rate ] THANK YOU JILL

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From the beginning in 2022 my CScan showed BE in three lobes. I have not had an exacerbation, nor pneumonia since 1987, and I have had a MAC infection, intracellulaire, probably before my finally being diagnosed with BE and the infection. I was bringing up a deep green mucus pus plug before learning of Bronchiectasis and the confirmation of my having it and the infection. Now that I am nebulizing for over a year I no longer have the deep green color mucus plugs, they are now light yellow. My mucus itself is clear...it is just the plugs that appear yellow in color.
I feel well and have not taken the antibiotics, my choice at 82 and 11 months of age.
Yes it is a chore to do the nebulizing, breathing techniques and huff coughing but I believe that it has helped me so far.
Thought it might help to hear how it is for me and hope this helps with all those posting and concerned about possible outcomes etc. etc.
Barbara

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scoop | @scoop | Sep 12 8:49pm
In reply to @blm1007blm1007 "Scoop- I know that we are all different with how and what we experience with BE..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

Scoop- I know that we are all different with how and what we experience with BE in general however I have a question for you that is related to getting the mucus out and what I see.
I am nebulizing two to three times a day. I try to do 3 times a day with the last a bit before going to bed. That last session appears to have helped me with a good recovery sleep.
Every day I have mucus plugs, per my understanding of mucus plugs. They look exactly like what the very good Tyler RT said to me about what I had in the sputum vile when she looked at the vile and what was in it.
My question to you: Do you have mucus plugs every day??
Barbara

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Mine are more like globs. Mucus plugs in me are rarer and when they come up they are a harder consistency and smaller than the daily globs.

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blm1007blm1007 | @blm1007blm1007 | Sep 13 8:56am
In reply to @scoop "Mine are more like globs. Mucus plugs in me are rarer and when they come up..." + (show)
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Mine are more like globs. Mucus plugs in me are rarer and when they come up they are a harder consistency and smaller than the daily globs.

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Hi Scoop- Just lost my original reply to you so here goes again.
When you talk in terms of globs....are you saying greater than 1 mm in size....round, elongated etc.
When you say harder in consistency are you saying no longer soft jelly like, they have hardened?
I have not had hard consistency mucus, mucus plug as yet. Mine are somewhat round, mostly, with the largest being either a 1/2mm or a touch larger, roundish and sometimes mildly elongated.
I would say my clear mucus is more glob like compared to what I believe are the mucus plugs.
Barbara

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sweethighland | @sweethighland | Sep 13 3:51pm
In reply to @blm1007blm1007 "From the beginning in 2022 my CScan showed BE in three lobes. I have not had..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

From the beginning in 2022 my CScan showed BE in three lobes. I have not had an exacerbation, nor pneumonia since 1987, and I have had a MAC infection, intracellulaire, probably before my finally being diagnosed with BE and the infection. I was bringing up a deep green mucus pus plug before learning of Bronchiectasis and the confirmation of my having it and the infection. Now that I am nebulizing for over a year I no longer have the deep green color mucus plugs, they are now light yellow. My mucus itself is clear...it is just the plugs that appear yellow in color.
I feel well and have not taken the antibiotics, my choice at 82 and 11 months of age.
Yes it is a chore to do the nebulizing, breathing techniques and huff coughing but I believe that it has helped me so far.
Thought it might help to hear how it is for me and hope this helps with all those posting and concerned about possible outcomes etc. etc.
Barbara

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I have mucus plugs all the time, no matter how much airway clearance I do 🙁 yellow, green and beige.

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blm1007blm1007 | @blm1007blm1007 | Sep 13 4:57pm
In reply to @sweethighland "I have mucus plugs all the time, no matter how much airway clearance I do :(..." + (show)
Profile picture for sweethighland @sweethighland

I have mucus plugs all the time, no matter how much airway clearance I do 🙁 yellow, green and beige.

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I was diagnosed in 2022. It appears you found your way to this Mayo site in 2022. I found my way to Mayo in 2023.
I am living with MAC intracellular. I have not started the antibiotics, my choice.
I know you have posted before but I don't remember if you have MAC or if you had a MAC infection? Did you ever start antibiotics if you have/had an infection?
Thank goodness I feel well. How are you feeling considering all?
Barbara

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jillcrawford | @jillcrawford | Sep 15 1:38pm
In reply to @sweethighland "I have mucus plugs all the time, no matter how much airway clearance I do :(..." + (show)
Profile picture for sweethighland @sweethighland

I have mucus plugs all the time, no matter how much airway clearance I do 🙁 yellow, green and beige.

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Me too
As well as exacerbation I hope it gets better. Sorry you’ve had no luck.

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