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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narelled23 | @narelled23 | Feb 17 10:29pm
In reply to @sueinmn "@narelled23 One friend copes by following the bronchiectasis protocol of nebs and antibiotics. She has maintained..." + (show)
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@narelled23 One friend copes by following the bronchiectasis protocol of nebs and antibiotics. She has maintained well for over a year now, but won't see her pulmonologist until April. Sad to say, the other is in denial, and only responds to each infection flare.

As we have learned here on Connect, each person has their own response to every disease, exacerbation and infection. I am glad you are taking a proactive approach, and hope you find an answer soon.

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@sueinmn

Thank you Sue. I would like to connect with people with ILD...are you aware of any forum? Have yet to check here on Mayo.

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Sue, Volunteer Mentor | @sueinmn | Feb 17 11:46pm
In reply to @narelled23 "@sueinmn Thank you Sue. I would like to connect with people with ILD...are you aware of..." + (show)
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@sueinmn

Thank you Sue. I would like to connect with people with ILD...are you aware of any forum? Have yet to check here on Mayo.

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@narelled23 Go to the lung conditions group and search. If there is not a discussion, you could start one.

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narelled23 | @narelled23 | Feb 18 12:38am
In reply to @sueinmn "@narelled23 Go to the lung conditions group and search. If there is not a discussion, you..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@narelled23 Go to the lung conditions group and search. If there is not a discussion, you could start one.

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@sueinmn Thank you, sue...I have done that.

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blm1007blm1007 | @blm1007blm1007 | Feb 18 10:03am
In reply to @narelled23 "@blm1007blm1007 May I ask if you have been diagnosed with ILD? Keen to connect with people..." + (show)
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@blm1007blm1007

May I ask if you have been diagnosed with ILD? Keen to connect with people who have.

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@narelled23 No, not so far. Let us know what you find out.
Reading your post and Sue's post put me in, somewhat of, a need to understand some of what was said.
Barbara

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scoop | @scoop | Feb 18 2:35pm
In reply to @narelled23 "@sueinmn Thank you Sue. I would like to connect with people with ILD...are you aware of..." + (show)
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@sueinmn

Thank you Sue. I would like to connect with people with ILD...are you aware of any forum? Have yet to check here on Mayo.

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@narelled23 if you cannot find a group on mayo connect then check on Facebook. From my reading, ILD is sometimes associated with immune disorders.

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2 replies
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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 18 4:29pm
In reply to @scoop "@narelled23 if you cannot find a group on mayo connect then check on Facebook. From my..." + (show)
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@narelled23 if you cannot find a group on mayo connect then check on Facebook. From my reading, ILD is sometimes associated with immune disorders.

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@narelled23 (@scoop @sueinmn), you can connect with other members talking about interstitial lung disease (ILD) in the Lung Health support group here https://connect.mayoclinic.org/group/lung-conditions/

Use search to find ILD specific discussions:
https://connect.mayoclinic.org/search/discussions/

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pacathy | @pacathy | Feb 18 5:46pm

I’ve just been reading a bit about airway remodeling related to asthma this week. My issues are minor in comparison toyours with just mild cough variant asthma and mild bronchiectasis. I had only needed Advair, the miracle drug that stopped my cough about 4 years ago. Over the past couple months with our colder than normal winter and significant windy days, the dry cough increased from occasional bouts to daily in past week. Doc increased the dose today. In trying to sort out what was happening, I ran across papers on airway remodeling in asthma that were helpful and interesting, especially the age related differences. You might have seen some of those, but I just found them on a scholarly google search.
Allergies are a driver of inflammation and I’d think getting help with that thru an allergist/immunologist would be great step to take .
Good luck to you. It sounds like you’re being proactive, always a good thing.

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narelled23 | @narelled23 | Feb 18 6:38pm
In reply to @scoop "@narelled23 if you cannot find a group on mayo connect then check on Facebook. From my..." + (show)
Profile picture for scoop @scoop

@narelled23 if you cannot find a group on mayo connect then check on Facebook. From my reading, ILD is sometimes associated with immune disorders.

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@scoop
Thanks, Scoop. Yes it seems something is happening with my immune system.

It is interesting...a naturopath told me 40 years ago I was headed for an auto immune condition...the endocrine system very stressed. I didn't know about auto immune conditions that affected breathing...I might have done more to avoid stress. There has been enormous stress in my life.

Not sure what more I can do now...it seems once it starts it is unstoppable. And there is nothing more stressful than not being able to breathe.

I have found the Mayo ILD page...and that is depressing. Oxygen around mid 90s atm.

Thank you for your support. 🙏

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narelled23 | @narelled23 | Feb 18 6:40pm
In reply to @colleenyoung "@narelled23 (@scoop @sueinmn), you can connect with other members talking about interstitial lung disease (ILD) in..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@narelled23 (@scoop @sueinmn), you can connect with other members talking about interstitial lung disease (ILD) in the Lung Health support group here https://connect.mayoclinic.org/group/lung-conditions/

Use search to find ILD specific discussions:
https://connect.mayoclinic.org/search/discussions/

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@colleenyoung
Thank you Colleen.

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narelled23 | @narelled23 | Feb 18 6:48pm
In reply to @pacathy "I’ve just been reading a bit about airway remodeling related to asthma this week. My issues..." + (show)
Profile picture for pacathy @pacathy

I’ve just been reading a bit about airway remodeling related to asthma this week. My issues are minor in comparison toyours with just mild cough variant asthma and mild bronchiectasis. I had only needed Advair, the miracle drug that stopped my cough about 4 years ago. Over the past couple months with our colder than normal winter and significant windy days, the dry cough increased from occasional bouts to daily in past week. Doc increased the dose today. In trying to sort out what was happening, I ran across papers on airway remodeling in asthma that were helpful and interesting, especially the age related differences. You might have seen some of those, but I just found them on a scholarly google search.
Allergies are a driver of inflammation and I’d think getting help with that thru an allergist/immunologist would be great step to take .
Good luck to you. It sounds like you’re being proactive, always a good thing.

Jump to this post

@pacathy
Thank you Cathy...I appreciate that.

I have managed to bring my resp. specialist appointment forward to 11 March, and am trying to pre-empt his suggestion with my getting in to see an immunologist on 4 May with possibly of an earlier cancellation.

Don't know that there is much more I can do. I am 75 shortly always been pretty fit, go to the gym 4 times a week, occasional walks and paddling. Will try to keep as much of that up.

However I really value you guys here...I live alone and other people just don't get these conditions.

Thank you for your support. 🙏

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