Tracheomalacia

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Doe anyone else here have tracheomalacia?

I ask because I have just been confirmed (as in today) as having it - thankfully only mildly and currently not needing treatment for it, probably the congenital form, but I was wondering what sort of q's I need to be asking my consultant (severe asthma consultant with a specialism in tracheomalacia) when I next see him. (I had been adopting the head in sand approach up until confirmation of it, so whilst I know the symptoms etc, I haven't really discussed it with anyone other than my husband.) Today was not a day to be asking q's - I was a little too woozy from the sedation from the bronchoscopy.

He also diagnosed another condition in my throat which needs an immediate referral to an ENT consultant for surgery quite urgently...

But I know he is happy for me to continue staying fit and cycling etc, which from my point of view is a good thing.
 

Ern1e

Über Member
Hi satnav sorry but i don't have that problem I have only responded to say once you have your head back straight think of anything you may like to ask and "write them down" I only tell you this from my experinces with sleep apneoa and going to see the consultant and trying to remember what it was that I thought I should and well forgot more than I asked ! Over time you do find out what you need to know but sometimes it can be to late.
 

Sara_H

Guru
Hi SatNav. I don't have tracheomalacia but have nursed many children who do.

It's one if those conditions that some can have silently without having symptoms through to causing a significant impact on breathing and eating.

The important thing is to ask your consultant to what extent your respiratory problems are caused by the tracheomalacia and what, if any, treatment you could have that night improve things for you.

I usually reassure my patients parents that to some extent children "grow out of" tracheomalacia, as its usually diagnosed and at its worst in infancy, but I think you're past the growing out of it phase!
 
OP
OP
SatNavSaysStraightOn

SatNavSaysStraightOn

Changed hemispheres!
Hi SatNav. I don't have tracheomalacia but have nursed many children who do.

It's one if those conditions that some can have silently without having symptoms through to causing a significant impact on breathing and eating.

The important thing is to ask your consultant to what extent your respiratory problems are caused by the tracheomalacia and what, if any, treatment you could have that night improve things for you.

I usually reassure my patients parents that to some extent children "grow out of" tracheomalacia, as its usually diagnosed and at its worst in infancy, but I think you're past the growing out of it phase!
Hi & sorry for the late reply/response (issues with my Addison's after Saturday's ride and in-laws 50th wedding anniversary left me wiped out for a few days).

I appear to have had it silently for most of my life, if not all of it (the rattle in the cough has been there as long as anyone can remember), but after all of last year's issues following the broken ribs, repeated chest infections & problems with my asthma which had me off the bike for 3 months, I now have issues with breathing and eating as well - just my luck... but to be honest it is the sudden random coughing/breathing issues when eating or drinking that is getting to me - I end up coughing until I either pass out, sneeze (don't ask!) or throw up... guess it is just getting to me at the moment :sad:
 
OP
OP
SatNavSaysStraightOn

SatNavSaysStraightOn

Changed hemispheres!
But ... somehow, you still get out there and do it - respect!

I passed you on the steep part of the Trough climb when you just ran out of breath. I could see how hard you had been trying by how red your face had gone.
thanks - same with you as well and you look much younger in real life than your avatar makes you out to be!
Also don't think nil by mouth the day before helped me much on that climb! I was a lot better in the afternoon, energy wise. pleasantly surprised to see an average of 12.2mph moving speed for the entire run.
 

fossyant

Ride It Like You Stole It!
Location
South Manchester
Hope you are doing OK satnav.

The important thing is getting through to the expert consultant that knows the issues, and maybe you.

My hospital visit was a waste of time, didn't get to see my consultant at all, so as soon as I saw the guy that walked in, I pushed his knowledge passed what he knew, I knew more... I requested seeing my surgeon next time. I am not chatting to some person that didn't do the operation about some serious decisions..

Chin up and keep going as we all try to say.

Best wishes from me...
 
OP
OP
SatNavSaysStraightOn

SatNavSaysStraightOn

Changed hemispheres!
thanks @fossyant . Luckily this consultant insists on seeing all of his patients and personally did the bronchoscopy. Getting the referral to his hospital was the hard part - was referred to someone else, who on the first appointment said he wanted to refer me to this consultant. He also recognises all of his patients when out and about around the hospital and will say hello to you as well. I think he is only the 3rd one I have known like that - human!

Bad night last night - very little sleep & one of those coughing fits woke me and didn't depart until I threw up repeatedly in the bathroom. :sad: OH is away from home so at least I didn't wake him up repeatedly which is one blessing. Did consider not cycling over to my parents' today, but think it will help my head more than anything else, even if it only makes up its mind on whether the new waterproof top is any good, :rolleyes: so just 'wrapping up' to go out and cycle 22 miles in the rain/drizzle. Raintoday.co.uk shows it is going to get a good test!
 

Archie_tect

De Skieven Architek... aka Penfold + Horace
Location
Northumberland
Wow Satnav, hope the ongoing treatment helps to bring you relief from what you've been putting up with so stoically... all the best.
 
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