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.
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janedivney
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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 ××
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!
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! 😊
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
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
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?
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 🥰👍🙏🙌
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
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
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
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