EDAC Excessive Dynamic Airway Collapse

[Bil_Tong]

I have been diagnosed with EDAC within the last year but I believe I’ve had it all my life because for as long as I can remember I have always had difficulty breathing out. I’m 73 years old 74 in December and was diagnosed with asthma in the 60’s

On my EDAC diagnosis I was give a APAP machine (and automatic CPAP). I had real difficulties using it as it simply exacerbated the condition, as I can breathe in. I can’t breathe out. I couldn’t use it longer than 15 minutes before difficulties. I handed it back after a mont of trialing it.

Subsequently I’ve got myself a nebuliser for saline and other fluids with the view to helping me get rid of the ever increasing amounts of very sticky phlegm. It works well and does help but the saline solution burns if I use it too often.

Does anyone have any other things they do to help alleviate the condition.

I am reasonably active. I average between 2000 and 4000 steps a day, depending on how I feel

Thanks

[peege]

A dear friend also has EDAC (also bronchiectasis, asthma, colonised pseudomonas, H Influenzae, another colonisation plus aspergillosis). She finds a night breathing aid helpful. Do you have the right one I'm wondering 🤔 . She's tge same age as you and looked after by The Royal Brompton hospital. The helpline number is 0300 222 5800, do give them a ring fir knowledgeable support, advice and guidance. Good luck.

[Patk1]

Welcome to the forum.ive severe EDAC+ severe tracheobronchomalacia ( tbm) at greater thn 90% on normal breathing in+ out,along with many other lung diseases.i was already on Bipap niv for type2 respiratory failure,which is pressurised at least I can tolerate - most of the time.yr ventilation team should've tried different settings for you - it may be worth trying again?Re neb - what strength r yr saline nebs and do u use salbutamol first?

Take a look on aluk website at" 1.controlled pursed lips breathing" to relieve edac,and also when walking,going upstairs etc.its a godsend for me.

2.Also at lung clearance techniques - active cycle of breathing (acbt). It really helps with the huffing technique.

3. I'd practise + use thm but request a respiratory physio appointment as they'll help u perfect techniques.

4.Ask gp for an " aerobika" flutter device to help create vibrations in Airways which helps loosen mucous too

I've numbered separate pts to break it down for u

[Bil_Tong in reply to Patk1]

Hi Patk1

Thanks for the reply. I have found the long breath out (as long as I can) with pursed lips for pressure does help a lot also the blast out of the lung by squeezing the diaphragm helps move the phlegm too.

I will look into the flutter Aerobika device as well.

Thank you

[risabel59]

Hello, I was diagnosed with severe EDAC last year, after a dynamic ct scan. I have had asthma pretty much all my life, hay fever and allergies to go with it. I have had a lot of respiratory physio, for the EDAC which has been very helpful, particularly when exercising. I was prescribed a pep mask, and a specfic breathing technique to help my cough mechanism clear the mucus. Although I don't get huge amounts of mucus, if I get a cold or infection it gets stuck deep in my lungs and is hard to clear. My doctors are at the Brompton, they are very helpful. I don't want to use a CPap machine unless absolutely forced to, as I know it won't improve my sleep.

I think that a lot more people are now being diagnosed with this with the advent of dynamic ct scans. In the past it could only be diagnosed with a Bronchoscopy, which of course is not an everyday test.

It has been suggested to me that EDAC may be caused by long term inhaled steroid usage, and I have been using them for about 50 years. Anyway my doctors are trying to cut my steroid usage and find other solutions. I think hypertonic saline is a good option.

Cheers

R

[Bil_Tong in reply to risabel59]

Thanks R

I have had steroids occasionally but only take them if really bad. My consultant did a bronchoscopy when I told him I’d had whooping cough as a small child. I did some research and found that it’s thought this may be a contributing factor, but the truth is they don’t know what causes it because we are all so different

S

[risabel59 in reply to Bil_Tong]

interestingly I also had whooping cough as a child despite having a vaccination in the early sixties. I was quite ill with it, despite everyone saying it would have been really serious if I hadn't had the injection.

R

[Bil_Tong in reply to risabel59]

Interesting coincidence. I was about 3 apparently so it would be c1953 and as far as I’m aware there wasn’t any vaccines then. I had nephritis at the same time but my mum said I wasn’t allowed in the hospital because of the whooping cough.

S

[Brittleasthma47]

I find these good I dilute 1 tablet in a small amount of water in the morning.

It helps to clear mucus . My consultant prescribed them for me.

I’m prescribed regular nebs I take saline , salbutamol and Ipratropium .

I suffer with mouth thrush sometimes.

Hope this helps .

Medication