Has anyone experienced 'Airway Remodelling'?
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.
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@narelled23
Your explanation "...apparently when inflammation has been proceeding unchecked over some time and which results in airways thickening and narrowing and reduced lung capacity..." is spot on.
All inflammatory/constrictive/infective lung conditions lead to remodeling in some form over time. When Bronchiectasis occurs in company with another condition like Asthma or Cystic Fibrosis, the amount of remodeling can increase significantly.
Bronchiectasis results in some or all of the following - scarred airways, widened airways, impaired ciliary function, non-responsive airways, nodules, cavities - all of these are forms of remodeling.
Here is a quick explanation:
https://asthma.net/living/severe-asthma-what-is-airway-remodeling
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5 ReactionsMy understanding is that remodeling of airways is what happens in bronchiectasis. Affected breathing tubes become dilated (larger) allowing mucus to pool and natural clearance impossible.
Have they ruled out GERD/reflux? Aspergillosis? Do steroids help with the excess mucus?
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1 Reaction@scoop
am getting the impression that this is different, but not sure...my test results are coming in slowly. So far mild Neutropenia, have C3C biomarker for intestital remodelling in fibrotic disease; C4 is low (which is protein for immune system function). My GP says that there is something going on in my immune system. My sinus HRCT was unremarkable acc to my GP (haven't had second specialist appt yet); lung HRCT report not back yet; sputums ok.
"The C3C biomarker assay measures specific neo-epitope fragments of type III collagen generated through cathepsin-mediated degradation, serving as an indicator of interstitial matrix remodeling in fibrotic diseases."
I have GERD and reflux. My naturopath recently picked up Mast Cell Activation, Klebsiella pneumonia, Coronavirus (which she says 70% of her clients have), Aspergillus niger and round worm (via electro dermal testing - not recognised generally by Western med). I had Coronavirus in 2022 and this is the first time back to naturopath since...so maybe residual in my system? The Aspergillus I am wondering if I picked it up last year in Qld, and I don't know about the Klebsiella.
The severe SOB I am experiencing (not all the time, but intermitently) started on my trip to Qld last year after I camped alongside a sugarcane factory burning off great funnels of black and white smoke...and it then continued on my travels and I seemed to be reacting to everything - smoke, dust, damp etc...which makes sense with a Mast Cell Activation.
I am trying to piece it together. The specialist seemed alarmed that there had been such a drop in lung function.
I have tried to sumarise my Spirometry results over the years (attached) and would be very grateful for any light you or anyone could throw on them for me.
Thank you so much!
@sueinmn
Thank you so much for that, Sue. I am worried that it is something other than the 'normal' bronchiectasis remodelling.
My test results are coming in slowly. So far mild Neutropenia, have C3C biomarker for intestital remodelling in fibrotic disease; C4 is low (which is protein for immune system function). My GP says that there is something going on in my immune system. My sinus HRCT was unremarkable acc to my GP (haven't had second specialist appt yet); lung HRCT report not back yet; sputums ok.
"The C3C biomarker assay measures specific neo-epitope fragments of type III collagen generated through cathepsin-mediated degradation, serving as an indicator of interstitial matrix remodeling in fibrotic diseases."
I have GERD and reflux. My naturopath recently picked up Mast Cell Activation, Klebsiella pneumonia, Coronavirus (which she says 70% of her clients have), Aspergillus niger and round worm (via electro dermal testing - not recognised generally by Western med). I had Coronavirus in 2022 and this is the first time back to naturopath since...so maybe residual in my system? The Aspergillus I am wondering if I picked it up last year in Qld, and I don't know about the Klebsiella.
The severe SOB I am experiencing (not all the time, but intermitently) started on my trip to Qld last year after I camped alongside a sugarcane factory burning off great funnels of black and white smoke...and it then continued on my travels and I seemed to be reacting to everything - smoke, dust, damp etc...which makes sense with a Mast Cell Activation.
I am trying to piece it together. The specialist seemed alarmed that there had been such a drop in lung function.
I have tried to sumarise my Spirometry results over the years (attached) and would be very grateful for any light you or anyone could throw on them for me.
Thank you so much!
@narelled23 I'm not a doctor, so I don't try to interpret test results, even my own.
It does sound like something besides bronchiectasis is going on - I have friends with idiopathic pulmonary fibrosis (IPF) and interstitial lung disease (ILD) diagnoses in addition to bronchiectasis - perhaps that is where all of your testing is leading the doctors.
Are you in the care of a good pulmonary specialist? This looks to be way beyond the scope of either a naturopath or general practitioner.
PS Even as a strong supporter of complementary and alternative medicine, I have huge skepticism about dermal testing for diagnosis of infections. Any single machine or test that purported to diagnose a wide range of maladies has always been proven by science to be wrong.
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1 Reaction@narelled23 Gosh, I hope you get to the bottom of it soon. A consult with an immunologist sounds in order.
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3 Reactions@sueinmn
This is my fear...may I ask how your friends cope with this mix of disease?
I have been in the public system but have just now seen a private pulmonary specialist and next appt in around 2 months.
I am trying to pre-empt his diagnosis by trying to get in to see an immunologist before next appt...as I suspect that will be his next suggestion to try to find what is driving this.
Appreciate your input, Sue.
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1 Reaction@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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3 Reactions@sueinmn Reading about your friends that have other lung diagnosis plus Bronchiectasis opened my eyes and put me in a sate of wonder.
I wonder which was diagnosed first for them.
I wonder if the Bronchiectasis followed, developed afterwards or vice versa.
I wonder if one leads to the other?
I wonder if the medical profession knows the answers.
I tried finding information regarding my " I wonders" but all just explain the lung problem, the symptoms etc. with each disease.
It appears that most of the same tests that are performed for Bronchiectasis also help to diagnose idiopathic pulmonary fibrosis and interstitial lung disease.
Also, here in Oklahoma at OU Medical Center OKC they have a doctor that has just recently been approved to concentrate on Bronchiectasis and ILD patients. I was referred to her by my local pulmonologist who has worked for some time with patients and their doctors from either Tyler or NJH. I am not sure if OU Medical Center is working on becoming a center of excellence but I will find out in March with my first appointment.
Barbara
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1 Reaction@blm1007blm1007
May I ask if you have been diagnosed with ILD? Keen to connect with people who have.