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.

narelled23 | @narelled23 | Feb 19 12:43am

This has just come up on my phone! It has been listening to me again.
Has anyone heard of this?
https://scitechdaily.com/a-breakthrough-discovery-could-help-lungs-repair-themselves/

narelled23 | @narelled23 | Feb 19 2:16am

In reply to @scoop "@narelled23 Gosh, I hope you get to the bottom of it soon. A consult with an..." + (show)

@scoop
Have managed to bring forward my Resp. Spec. appt to 11 March and got in to Immunologist early May, but on a cancellation promise there for something beforehand. So think that is all I can do.

Scoop, have you heard about the research Mayo is involved in to switch on the alveoli cells to repair and not just defend? It came up on my phone today.

scoop | @scoop | Feb 19 9:41am

In reply to @narelled23 "@scoop Have managed to bring forward my Resp. Spec. appt to 11 March and got in..." + (show)

@narelled23 I’ve read about related studies in China. Glad to hear it’s happening in US also.

gigiv | @gigiv | Feb 19 10:35am

In reply to @narelled23 "This has just come up on my phone! It has been listening to me again. Has..." + (show)

@narelled23, thank you for sharing that link. Music to my ears.
Best wishes of great health to all of us!

htolan | @htolan | Feb 19 11:14am

In reply to @sueinmn "@narelled23 Go to the lung conditions group and search. If there is not a discussion, you..." + (show)

@sueinmn What is SOB and ILS? I am fighting bronchiectasis and need to understand all that I can. Thanks

Sue, Volunteer Mentor | @sueinmn | Feb 19 11:28am

In reply to @htolan "@sueinmn What is SOB and ILS? I am fighting bronchiectasis and need to understand all that..." + (show)

@htolan SOB = shortness of breath
ILS = interstitial lung disease

Sue gets the first 😖 for not making sure acronyms are spelled out!

blm1007blm1007 | @blm1007blm1007 | Feb 19 3:15pm

In reply to @narelled23 "This has just come up on my phone! It has been listening to me again. Has..." + (show)

@narelled23 One of the good pieces of information received that was not necessarily looked for or specifically asked for....Good things do happen with technology.
Thanks for passing the link on.
Let's hope it all comes together quickly for all that can be helped with the information and findings.
Barbara

narelled23 | @narelled23 | Mar 11 4:11am

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!

narelled23 | @narelled23 | Mar 12 5:17am

@sueinim
@scoop25

narelled23 | @narelled23 | Mar 12 7:05am

In reply to @sueinmn "@narelled23 Your explanation "...apparently when inflammation has been proceeding unchecked over some time and which results..." + (show)

@sueinmn @scoop
Sue, I have just had my Respiratory Specialist appointment and thankfully no ILD, but mod to severe COPD. He has put me on the LABA/LAMA Anoro.

Do either of you, or anyone else, have any experience of Anoro or anything you could share? Do you have COPD? Do most of us with Bronchiestases also have COPD? Thank you. 🙏