Excessive Dynamic Airway Collapse

[janedivney]

Hello everyone.

Good news for anyone with EDAC (a fairly rare condition, a form of tracheobronchomalacia.) I have over 70% airway collapse, which means any exertion - eg walking across a room - makes me very breathless. However, my life has been greatly improved in the last 9 months by using a C-PAP machine at night. This is usually prescribed for sleep apnoea but for reasons not yet understood it helps with EDAC too. I’ve gone from struggling to walk out to my car, to being able to go upstairs without stopping. I can walk for about half a mile, just stopping a few times to recover my breath (I have other significant lung problems too.) It’s hard to get used to a C-PAP but for me the benefits have been phenomenal.

[sassy59]

What wonderful news for you. Thanks for the info. Xxx

[janedivney in reply to sassy59]

Thank you, sassy. I’m sure there must be more people here who’d benefit x

[peege]

This is tremendous news janedivney! I'm really thrilled that you now have something to improve your health, life and experience more joy with your family. Long may it continue. Much love Peege

I noticed a reply yesterday from a member with EDAC so I'll find it and pass on a link to your post ××

[janedivney in reply to peege]

Oh yes, please do! It’s a simple device but helps so much. I’m so pleased I persevered and forced myself to get used to it 😊x

[Alberta56]

That's good news. I wonder if anyone else would benefit from knowing this. xxx

[janedivney in reply to Alberta56]

I’m sure they would! I don’t think the hospital expected it to be so successful. It was a case of “well we can try this if you like” x

[Alberta56 in reply to janedivney]

I'm glad they did.

[Patk1]

That's great for you.itll be the pressure of air keeping Airways open.ive severe EDAC +severe tracheobronchomalacia affecting throat,bronchi and peripherals,both greater than 90% collapse.ive been on bipap for bout 8yrs for type2respiratory failure.i do feel better for using it+ can feel awful if I take it off for a cpl of hours.respiratoty physio said aerobika forces them open too,so it's worth keeping it to hand.i find remaining calm and persevering with " controlled breathing technique " is my life saver.i also have ILO/VCD - vocal chords randomly close to a pinhole too - I think my body is trying to finish me off!

[Alberta56 in reply to Patk1]

Don't let it. We need you. xxx

[Patk1 in reply to Alberta56]

Ohh thanku Alberta 😘.it's just a gd job I'm a little toughie xxxx

[Alberta56 in reply to Patk1]

😙😚😚👍🏼👍🏼👍🏼

[janedivney in reply to Patk1]

Oh dear, all that sounds extremely hard to cope with. I swear by pursed lip breathing. I’ve had lung problems all my life and they’ve become more & more tricky, which is why I’m so happy to have found something which works, and isn’t another medication. I didn’t find much benefit from an aerobika but will dust it off & try again! 😊

[Patk1 in reply to janedivney]

Yes it is,I've a lot of lung + airway probs.yes whn can't breathe I go straight into pursed lips controlled breathing until airflow improves.i like the aerobika for help with getting mucous up,but worth a try whn Airways collapse x

[garshe]

So pleased for you. Hope you continue to enjoy getting out. xx.Sheila 🩷

[janedivney in reply to garshe]

Thank you, Sheila! I live for my trips out, love being in the midst of nature and get very depressed if I’m stuck indoors x

[garshe in reply to janedivney]

I've been stuck indoors for 9 months . I loved going out but since on 24/7 oxygen I can't face it. Went to dentist on Monday first time and took small cylinder as large one too heavy for me. It ran out of oxygen before I got home. Ended up calling 999 and taken home in Ambulance on their oxygen . Now my confidence is shattered . Enjoy every second of your trips out . Lots of love ❤️ xx.Sheila

[janedivney in reply to garshe]

Oh no! What a horrible thing to happen! Confidence is so important, we have to feel safe to go out. But being stuck indoors is so depressing. Last year when I was virtually immobile, people kept suggesting a scooter. The consultant suggested a wheelchair! I just wouldn’t consider it though. What about you, Sheila?

[garshe in reply to janedivney]

I can't get out of my house in wheelchair as have steps. I'm so used to being indoors I can't leave the house especially after my oxygen running out. So happy for you and pray you continue to go out and about. Good luck and sending Welsh cwtches ( hugs) xx.Sheila 🥰👍🙏🙌

[Izb1]

This is really good news and so glad you found something to help you. I hope others read this that may benefit x

[janedivney in reply to Izb1]

They’re only recently discovering the potential benefits. I asked the consultant why it works during the daytime too, when I’m not using it, but all he could say was, they’re not sure, but it does! x

[Izb1 in reply to janedivney]

Maybe the fact that you are getting oxygen all night long is benefitting you during the daytime x

[janedivney in reply to Izb1]

Oh no, I’m on room air, not oxygen. Bronchiectasis etc doesn’t tend to dangerously lower sats. At night the c-pap forces air into lungs, to keep airways open, and somehow the effect lasts into the daytime. I don’t understand it, tbh x

[Izb1 in reply to janedivney]

Dont suppose it matters providing you are benefitting from it . I am sure the medical people will look I to why this is happening x

[Patk1 in reply to janedivney]

It helps correct the blood levels of co2,02 and sodium bicarb , which go out of sync in respiratory failure,sleep apnoea etc.x

[janedivney in reply to Patk1]

Thanks for that, Pat x

[Ergendl]

What great encouragement for others with your condition.

[janedivney in reply to Ergendl]

I’m sure it’s not well known about, so I’m trying to spread the word 😉

[Chinadoll81]

Yrs So happy for you

I would benefit from this but chances of getting one here in the Highlands is almost nil

Wake up many times. Mouth is so dry and sooooo tired. Blessings and love xx

[janedivney in reply to Chinadoll81]

I don’t know about sleep apnoea, except they believe it to be under-diagnosed. I know morning headaches are a definite sign, and daytime sleepiness. There’s a way in which you can have the tests at home, no need to go to a sleep clinic

[Chinadoll81 in reply to janedivney]

Many thanks Blessings and love xxx