1. < MAC & Bronchiectasis
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Has anyone experienced 'Airway Remodelling'?

Posted by narelled23 @narelled23, Feb 16 8:05am

Does anyone have any information about 'Airways Remodelling '...apparently when inflammation has been proceeding unchecked over some time and which results in airways thickening and narrowing and reduced lung capacity?

Have just had my specialist appt and he mentioned the above (which I had discovered existed for myself through research last year). I have increasing volumes of mucus production (3 cups/day) and recently am experiencing a lot of SOB. According to my spirometry I have lost 1L of lung function in recent years. We are trying to discover what is driving the loss. But my next appointment is several months away where he will presumably have the information he needs to know why this is suddenly getting worse and if there is anything I can do to intervene. I think I am down to 1.5L of oxygen capacity.

I have no idea how bad that is or whether allergies etc might be causing a reversible oxygen loss.

Any idea very much welcomed. @sue

I don't know whether he was diagnosis that Remodelling for me or whether it was a possiblity. We have done bloods, HRCT of both sinuses and lungs, sputum was negative.

When SOB I am finding an antihistamine has been helping.

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

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amap2025 | @amap2025 | 6 days ago
In reply to @narelled23 "Had my second appointment with the Respiratory Specialist this morning. The good news is that there..." + (show)
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Had my second appointment with the Respiratory Specialist this morning. The good news is that there is no evidence of active ILD. I am very grateful. I will need to wait to see the immunologist next month to find out the significance of the ILD marker and other auto immune results.

Bottom line is:

I have unchanged mild Bronchiectasis (presumably causing all the mucus) ;

I have no sign of allergic asthma, but I do have asthma, symptoms are partially reversible;

I have moderate to severe obstructive airways disease (presumably causing the SOB).
(However in 2024 a report said "mild revesible obstructive ventilatory defect")

I am relieved and yet concerned about the obstructive airways - presumably COPD?

In any case we are dropping the Symbicort and taking up ANORO (LABA/LAMA) with a recheck in 3 months time. My SOB has improved over the last week since I have been taking an antihistimine, so I was hoping that there was a reversible allergy component.

Any comment, Sue or anyone else please?

I will see the immunologist next month to follow up on the auto immune markers etc.

Thank you very much...so grateful for you guys here!

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@narelled23
what is ILD and SOB

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Sue, Volunteer Mentor | @sueinmn | 6 days ago
In reply to @amap2025 "@narelled23 what is ILD and SOB" + (show)
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@narelled23
what is ILD and SOB

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@amap2025 & @narelled23 Thank you for asking - this is another good reminder not to use acronyms without defining them in each post.
SOB is shortness of breath
ILD is Interstitial Lung Disease - here is an explanation of it:
https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/symptoms-causes/syc-20353108
That said, I do not have Chronic Obstructive Pulmonary Disease (COPD), which is defined in this article:
https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679
I don't believe most people with bronchiectasis have COPD, just like most don't also have asthma or reflux (GERD) - each of us is different. Years ago, before CT scans were routine, and Bronchiectasis was not widely known, it was very common to be diagnosed with COPD based on symptoms, without further exploration. My Mom had the COPD diagnosis for almost 30 years before a pulmonologist figured out she had Bronchiectasis very late in her life.

As for Anoro, I will defer to others here who may have used it.

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narelled23 | @narelled23 | 6 days ago
In reply to @sueinmn "@amap2025 & @narelled23 Thank you for asking - this is another good reminder not to use..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@amap2025 & @narelled23 Thank you for asking - this is another good reminder not to use acronyms without defining them in each post.
SOB is shortness of breath
ILD is Interstitial Lung Disease - here is an explanation of it:
https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/symptoms-causes/syc-20353108
That said, I do not have Chronic Obstructive Pulmonary Disease (COPD), which is defined in this article:
https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679
I don't believe most people with bronchiectasis have COPD, just like most don't also have asthma or reflux (GERD) - each of us is different. Years ago, before CT scans were routine, and Bronchiectasis was not widely known, it was very common to be diagnosed with COPD based on symptoms, without further exploration. My Mom had the COPD diagnosis for almost 30 years before a pulmonologist figured out she had Bronchiectasis very late in her life.

As for Anoro, I will defer to others here who may have used it.

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@sueinmn thank you, Sue. Sorry about the acronyms.

Do you happen to know which of the two diseases is the most critical?

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Sue, Volunteer Mentor | @sueinmn | 6 days ago
In reply to @narelled23 "@sueinmn thank you, Sue. Sorry about the acronyms. Do you happen to know which of the..." + (show)
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@sueinmn thank you, Sue. Sorry about the acronyms.

Do you happen to know which of the two diseases is the most critical?

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@narelled23 That is a question for your doctors, but COPD is not a single disease like Bronchiectasis, it is a collection of symptoms that lead to the diagnosis.

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narelled23 | @narelled23 | 6 days ago
In reply to @sueinmn "@narelled23 That is a question for your doctors, but COPD is not a single disease like..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@narelled23 That is a question for your doctors, but COPD is not a single disease like Bronchiectasis, it is a collection of symptoms that lead to the diagnosis.

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@sueinmn
Thank you once again, Sue.

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