Bronchiectasis .. currently using Aerobika .. but just wondering has anyone / does anyone use the Evergreen Pari-o-pep mucus clearing device

[Phill1]

Hi

Has anyone tried the above device?..I get on ok with my aerobika but wondering if it’s worth spending £35 on the Evergreen Pari -o Pep? If it speeds things up I’d be interested in buying one

🙏

[Patk1]

I have the aerobika and the pari. I prefer aerobika as the pari soon gets wet inside from breath & have to keep dismantling to dry for it to work properly. Its very effective though

[Phill1 in reply to Patk1]

Thanks Patk1

So could it be used for an initial 10’ or so then move on to the aerobika? ..

Just want to see if I can get my daily mucus clearance down to an hour or under

It’s all so time consuming! 🤪

[Patk1 in reply to Phill1]

Yes,u could.crikey,that's a long time.ru on carbocysteine x

[Phill1 in reply to Patk1]

I take NAC…Tried carbo but just too many tablets🤪

Be interested to know how long most people take doing clearance..?

Using Aerobika usually nothing for the first 20’

[Patk1 in reply to Phill1]

I think about 20mins is recommended.i carry on til its cleared.soletimes its easier than others.how much ru getting up x

[Phill1]

gosh 20’ would be great

…on ‘normal’ days I usually bring up about 20 mls .. how about you?

Wondering why it takes me so long? I drink lots/ do aerobika and autogenic drainage

Be interesting to know what others do🫤

[Hidden]

Knowing that we are all different and having had extensive bronch since diagnosed in 1953 I will give you my experience. From a young child I have been bullied, pommelled, laid over wooden frames, wedges and pillows all at the insistence by physios and medics that I get rid of the mucus in the morning. I discovered for myself that early afternoon was the time when it is ready to come up and as methods to assist in this have developed, I first nebulise with salbutamol, ipatropiam and 0.9% saline. After about 20 mins it just flows out in accordance with the breathing and huffing that I sometimes do and sometimes don't. I now do the nebulising about mid afternoon whilst watching tv then do the breathing etc. I always stand over the loo to get rid of it.

If I am going to the theatre or out to dinner I have another little go before I go out.

Of course, if I have an exacerbation I have to clear it when it is bothering me.

An hour seems an awfully large chunk out of the day. Fitting it around your activities can work once you get into a routine.

[Phill1 in reply to Hidden]

Thanks LP

It’s so useful hearing what others have to do My routine is to take myself upstairs about 4.00pm & do aerobika on both sides then huffing until it feels like it’s all up

Not sure why it takes so long.. wondering if it’s because I don’t have that much to bring up .. or I’m being too tough on myself to get it all out .. but if I don’t it sometimes wakes me up in the night till I get a bit out🙄

Might try buying a Pari …and maybe a nebuliser if that doesn’t work?

[Hidden in reply to Phill1]

I think you are being too hard on yourself and maybe too obsessed with getting it all up in one go. As long as you have brought up a reasonable quantity for you and so that you can get on with your day I think that it is ok to go back if some more wants to come up. Moving around can loosen some more anyway.You could have a little go before bedtime. If you are considering loosening it with a nebuliser speak to your bronch consultant. Not the GP. They don't know about the viscisitudes of getting the gunk out. Nebulising salbutamol helps to open the airways to get the mucus from deep down and saline thins it. Quite a few bronchs use hypertonic saline (3,5or 7%)They say that they find it useful but actually, isotonic saline 0.9% is kinder and just as effective for me and was always the go to for bronchs until a few years ago. Hypertonic saline makes me very wheezy but isotonic is soothing. This is where we all have to find our own way. I hope that you get it sorted for yourself.

[Phill1 in reply to Hidden]

Thanks again LP

I need to not be so uptight about it.. think it’s because of the pseudomonas .. do not like taking cipro

I have Consultant appt in April so will ask about nebulising .. how long does that take to do ? x

[Hidden in reply to Phill1]

I have lived with pseudo since 1986. Yes cipro is horrible. My aggreement with my con is that if it has a party I start 750mg bd cipro. If it has not improved after 7 days I can have IV. I have been lucky and only had IV 4 times in my life. 3 of those to cover when other things have caused a problem. If your con is a bronch expert they will know of treatments you can have to keep pseudo down. You can go on to long term nebulised antibiotic such as colistin or ceftazidime. With pseudo I think too many people become fixated on eradicating it from their tests when actually it is more how you feel than what the petri dish says. It will always be there but standard tests cannot find the very small numbers. So as long as you feel well, keeping the numbers down by getting rid of as much mucus as possible is the best you can do. You seem to be doing everything right except that you are fixated on amounts etc. As I have never known not having bronch I had to live my life without being fixated or regarding myself as an invalid. I learned the routines from 5 yrs old and just got on with it. Otherwise I would have had no life.. Talk to your con - change to a bronch expert if yours isn't and try to relax.

[Patk1]

I usehypertronic saline after salbutamol nebuliser,do percussion combined with postural drainage and acb ,huffing technique,combined with AErobika,sometimes pari.My amount varies from approx 50+ ml-200+also.when ill can be up to 500mls over a day.

If its not coming up after 20 mins,get on with Yr day.youll hesr it moving up ,if it's there,with aerobika.perhaps ask to see respiratory physio

[Phill1 in reply to Patk1]

that’s a lot more than me & takes half the time! 🤪

Think I may be overdoing it but then I can feel a niggle in my lung if it’s not all gone.. which then can wake me in the night

Thanks for advice really appreciate it 🙏

Think I will try and get an appt with Resp Nurse.. will get a Pari meanwhile x

[Patk1 in reply to Phill1]

When I'm getting up over 100mls,it takes longer.Ru using salbutamol to dilate Airways,before doing lung clearance? It maybe worth considering carbocysteine.

Ru on montelukast?

Yes,im aware of mucous in 🫁 so I do get it up,in between sessions. During sessions,I use disposable plastic cups so it's easy to see consistency+amount.i put tissues in cup when done + dispose of in nappy bags.ihold it under lamp whn done - surprising how many "lumps" and can see if any blood.

I do find percussion helps alongside postural drainage - gentle fist taps to front of chest and around ribcage.i find its best to lie on side on bed, and can use aerobika on side too,then alternate.xx

[Phill1 in reply to Patk1]

Hi again

Not using Montelukast .. or a nebuliser but last 2 days have taken 2 carbo at lunchtime as well as my morning NAC and it seems a bit looser.. but still small puddles of the stuff coming after an hour ..🙄

I’m Going to try & reduce the time by 5’ every week see how that goes 🤞

I too use plastic ketchup type cups .. all a bit of a pain in the * ** isn’t it?

Ahh well ..

Thanks again x

[Patk1 in reply to Phill1]

Good.anything that helps is a bonus.its all trial+error xx