COPD devices

[Discograph]

A COPD FB group I'm a member of recommended the Aerobika. Does anyone use a breather or COPD device? Which one are you using and how has it helped you? Thank you 🙏

[crashdoll]

hi Discograph . I don’t have COPD, I have bronchiectasis but I use a flutter. It shifts the mucus really well when I use it after hypertonic saline. It shifts and clears mucus better than any breathing exercise I could do. I’m definitely better since using the flutter and I’d recommend it.

[Spacecat1 in reply to crashdoll]

Sorry to ask were did you get the flutter from. Have phelgm which cant shift how well does it work

[barbs47 in reply to Spacecat1]

Hi my respiratory nurse gave me a prescription to get mine on the NHS Barbs x

[Discograph in reply to barbs47]

I'm going to ask for a prescription in that case 👍

[Discograph in reply to crashdoll]

I'm checking it out online and will get one 👍

[cofdrop-UK in reply to Discograph]

You might want to ask your GP if they would prescribe a flutter as they are available on prescription, although your GP may not know. If you by it privately please make sure that you get a Medical VAT Exemption Form.

Good luck

Cx

[Discograph in reply to cofdrop-UK]

Thanks for the steer

[Hidden]

Different things work for different people: crashdoll swears by the flutter, but that didn’t do much of anything for my daughter, she barely cleared anything at all. An aerobika, which in theory does exactly the same job in the same way - positive expiratory pressure to ‘push’ mucus from behind and unblock clogged airways, and oscillation to help lift it off the chest wall - works brilliantly for her when combined with breathing techniques at the end of each cycle. Excluding the technique we use in hospital, which we can only use in hospital, it’s by far the most effective thing we’ve tried with her out of percussion, PEP mask, cough assist and flutter by a mile. Other people I’ve spoken to hate it and instead swear by PEP without oscillation. People who find the same technique beneficial may find that one has better results with a mouthpiece, but someone else finds a mask is the business. It really is horses for courses, and can be a fair bit of trial and error to find something that suits.

As a related aside, I feel I should mention that whilst reusable, most physio devices should be replaced every 6 to 12 months depending on the particular type. This isn’t often well communicated or understood by people who source them independently, but the reason for it is that regular sterilisation (which is an absolute must and should be done weekly to manufacturer’s instructions) weakens the integrity over time, and certainly within the cf community, studies have proven that they often begin to harbour bacteria even with correct cleaning and sterilisation with prolonged use.

[Discograph in reply to Hidden]

Ty for posting all of this information, which will be invaluable 🙏

[cofdrop-UK in reply to Hidden]

Absolutely spot on Charlie. Horses for courses. I often find different things for different times. I usually uses any of them as an aid not as a stand alone method of lung clearance. Having had BE for such a long time I still revert back (usually in the morning but not in the evening) to postural draining with percussion because it is what I have always known, I hate passive treatment and for me it is effective and I can work on the ‘hot spots.). I do note though that my physio explained that nowadays they do not teach pd with percussion to paediatrics with either cf or BE as they found some children using this method have reflux. (That’s why I have come to an understanding with physio not to do it at night)!

I read an article from a young man who has CF and he swears by the RC Cornet compared to other methods. Our friend Zube has one and is very pleased with it. Has E tried it? I think I might buy one as I don’t want to visit GP.

I hope E is doing well and that you both are not struggling too much with this lockdown. It must be very hard at E’s age to shield and hard for you too I would imagine.

Stay safe

Cx

[Hidden in reply to cofdrop-UK]

Hello, lovely lady! 😊

I’ll drop you a PM with the latest for E (five star from Friday coming), but we’re both shielding in our own right, now. All I can say is that I’m taking the fact that we’re still alive and have all our limbs at this stage as a win!

I’m a bit confused by what your physio has said, as PD is still extremely widely used and taught with CF. They don’t endorse tilting or tipping during percussion anymore for the reflux reasons, they were actually starting to phase that out when E was born, but all physio is still generally undertaken in combinations of upright, flat and side-lying positions, whether that’s NIPV based physio in hospital like the bird, or percussion with newborns. We occasionally chuck in a session of percussion with PD and AAD as an ‘extra’ on top of her masked aerobika sessions if she’s not particularly well at home. I also like hands-on, particularly when it enables you to feel where the issues are - hotspots, indeed!

[cofdrop-UK in reply to Hidden]

I think we are on the same page Charlie. I consider pd as tipping, (old school). whereas it is still done side-lyling, as you state. It does tick me off though when I hear folks say it is ‘old hat’ because physios in the past and myself for the whole of my life have worked our arses off attempting to clear my lungs as it was the gold standard, indeed the only standard of it’s time.

Cx

[cofdrop-UK]

Apologies Discograph hope I haven’t highjacked your post. You can see that although we have various lung conditions, we all have preferences when it comes to lung clearance an the gadgets to aid this, as described so well by Charlie. You might find it helpful before you start buying stuff or getting it on prescription to see if you can get a referral to a respiratory physio, who will explore what is the best method and/or gadget for you.

Good luck.

Cx

[Discograph in reply to cofdrop-UK]

Thank you, I have contacted the doctor to ask for these devices. However, I doubt they will issue on prescription, the last contact I have had with my doctor they have been very unhelpful, even rude. My doctor is rubbish 😢

[cofdrop-UK in reply to Discograph]

Difficult in this present climate but is there another surgery you can go to, or even a different doctor within the practice. It is very difficult if you have an unsupportive doctor, especially if they are rude. Probably had a charisma bypass. I hope you can find a positive way through this.

Cx