See below

[skipwork]

Can anyone answer this question please? Does using a nebulizer mean that one can dispense with their postural lung clearance. I am doing it for 3 sessions x 45 minutes on the bed and it is very tiring. I do hope a nebulizer means I can dispense with those long sessions. Which nebulizer is best for brochiectasis?

[Hidden]

In a very definite word. NO

The nebuliser is used in bronchiectasis to deliver saline, ventolin or antibiotic directly into the lungs.

The ventolin opens the airways to allow efficient absorbtion of the antibiotic

The antibiotic keeps the levels of bacteria down in the lungs.

The saline thins and loosens mucus in the lungs and airways.

This is an aid to expelling mucus, not a replacement for it.

The bacteria which cause exacerbations breed in the fluid in the lungs. The most important thing in the self management of bronch is to get this mucus out. A daily strict regime of doing this is essential to living a good life with this condition.

There are quite a few others on this forum who live with bronch and I am sure that they will tell you the same. Hopefully nebulising saline and/or taking carbocysteine would thin and loosen the mucus enough to make it easier to expel and less tiring. Also, breathing cycles should help you to ease the mucus out rather than tiring yourself out trying to force it.

I am sure that others will be along to help you with these tecniques which should make life much easier for you.

[O2Trees in reply to Hidden]

Maybe nebulising would at least reduce the time taken LP? Since it should be easier to bring the stuff up?

[Hidden in reply to O2Trees]

Yes exactly. I tried to say that but maybe didn't express myself too well.

[O2Trees in reply to Hidden]

You did fine LP, you always do.

[Hidden in reply to O2Trees]

X

[cofdrop-UK in reply to Hidden]

Spot on LP. Cx

[Bkin]

You would definitely need to check in with your respiratory nurse / adviser / specialist on this for guidance personally helpful for you.

What others are advised may not be advisable for you personally.

Check also about nebulizers and if / what medication can be prescribed for you if you do decide to purchase one.

Hope you find things can become a little easier and medicine that can help with this.

Best wishes

[Hidden]

Anyone who actually has bronchiectasis & produces mucus will tell you, you can’t just stop the drainage. If you do, the stuff blocking your airways will stagnate and bacteria will move in & multiply. I go to the Brompton, whose standard advice to bronchs is two 30min sessions per day. However, pts can tweak this to suit themselves, eg I produce more mucus in the eve, so I do 15mins am & 45mins pm. If I have an infection I might add a 3rd session.

It sounds as if you’re doing rather a lot. Too much huffing will inflame your airways & produce more mucus, esp if you have asthma too. Also, the idea of physio is to keep bugs at bay but not to tire you out. Your life shouldn’t revolve around your physio. If you’re tired you won’t be able to exercise, which is excellent for lung clearance & keeps you fit otherwise. Do you have a community physio you could speak to, or one at the hospital? Also, which drugs would you be nebulising? If your consultant has recommended anything, the hospital will usually provide a nebuliser. The Brompton does, although I’ve also bought a faster, portable one.

[Hidden in reply to Hidden]

Great reply Hanne62. Very helpful to emphasise that those who live with the condition know best how to tweak the ‘rules’ to do what is best for them. Thankyou x

[cofdrop-UK in reply to Hidden]

Spot on again Hanne and I would second both yours and LP’s posts.

Cx

[skipwork in reply to Hidden]

Bronchiectasis. Yes I have a physio. When I was in hospital they gave me a nebulizer to use. I sat up using it. It cleared the lungs. No postural breathing lying down on the bed was needed. Surely, this could happen when I am at home? Can you comment please ?

PS I wish there was a support group in London where we could all meet.

[Hidden in reply to skipwork]

I don’t lie on my bed to do my lung clearance. I stand by the toilet, do the breathing and ease it out. I developed this way of doing it many years before physios stopped lying people over wedges, beds and horrors when I was a child- a wooden rack kept at home.

When you say that the nebuliser cleared your lungs,what do you mean exactly? The mucus doesn’t just disappear back into the cells and has to come out. So do you mean that it made it easier to get it out?

[Hidden in reply to Hidden]

I don’t lie on the bed either. Years ago I used to tip myself over a wedge, but that’s very bad for acid reflux. Then I started doing it sitting up. But now I find the best way for me is lying on the sofa, first one side, then the other. After each breathing cycle I sit up & huff a few times. Lying on the sofa means I can watch some rubbish tv at the same time (has to be rubbish so I can concentrate on my breathing.) We all find out what works best, by trial & error

[Hidden in reply to Hidden]

Absolutely Hanne. We all come to know what is the best way for us. Given that it is as much a part of our lives as cleaning our teeth that can only be a good thing.x

[skipwork in reply to Hidden]

In hospital sitting with the machine, the 'mist' on the device cleared my airways and got rid of mucus.

[Hidden in reply to skipwork]

The mist from the saline in my nebuliser loosens the mucus so that it comes out easier. If it doesn't come out it just settles further down in the lungs . If we could nebulise something which would simply make mucus go away we would all be clamouring for it.

[O2Trees in reply to skipwork]

NO!! Seriously Skipwork nebulising doesnt get rid of the mucus. It is probably opening the airways making you feel it much easier to breathe. That may be giving you the impression that the mucus has gone. But it hasnt, it really hasn't. Unless you cough it up it will catch up with you later down the road. Bacteria in the lungs builds up and unless you get rid of it it will accumulate and make things worse. Even though you feel better.

The fact that you can breathe better shows that the nebulising is doing its job well but that's all it's designed to do - i.e. deliver meds to the lungs.

Hanne and Littlepom have been living with bronch all their lives - we're lucky to have their advice here on the forum. Please dont let your understandable desire not to have to do mucus clearance get in the way of best practice.

[skipwork in reply to O2Trees]

Please help. I am in a bad place with Brochiectasis. I do 3 x 45 minute clearance sessions a day. But I have two pressing questions:

a) It often takes 25 minutes for the real real clearance to kick in.

b) After the evening session I am left with a residue, a blockage which means I keep grunting/huffing for a couple of hours after. Really annoying for my wife. Please help.

[O2Trees in reply to skipwork]

Skipwork I dont have the expertise to help you. There's been a lot of good advice here from those who live with severe bronchiectasis. I have it too but only secondary to copd and since it doesnt trouble me that much I dont have advice about how to manage it. You could call the BLF helpline and talk to one of their nurses who are both supportive and well-informed. And it sounds like you need some (more?) input from your GP or respiratory nurse.

[Hidden]

Well, this is our support group! Do you go to the Brompton? If you live in London, try & get a referral, they’re the experts.

Do you recall what was in the nebuliser when you were in hospital? I think it would definitely help you, but it’s not a replacement for physio, you still have to move that stuff out of the far reaches of your lungs & into your main airway so you can cough it out. But as Littlepom says, something which thins & unsticks it makes this process much less tiring. Carbocisteine has no effect on me, I use 7% saline. It’s a bit harsh on the lungs so you’d need a couple of puffs of Ventolin first, but it definitely makes the coughing easier.

The Brompton physios & my consultant said I was doing too much physio! I think you possibly are too. Usually people don’t do enough (they said) but too much can be counterproductive. I was trying to clear my lungs completely but unfortunately that’s not possible. I really think you need to speak to your physio.

[skipwork in reply to Hidden]

I wish I did go to the Brompton. Last August, 2019 my Chest Physician discharged me at the Princess Royal Hospital after after 40 years. It was for Bronchiectasis and Sarcoidosis. A total mystery. She even cancelled a Lung Function test that was planned. Now my lungs are much worse she 'dumped' me. The Dr will try and get me back on the list - hopefully with a new Consultant.

[Hidden in reply to skipwork]

Madness! She probably decided you were too “complex”. I’ve had this word fired at me, mainly as an excuse for incompetent treatment.

Anyway, no worries as the Brompton accepts GP referrals. Which is your primary problem, bronch or sarcoidosis? I can pm you the name of a bronch expert

[skipwork in reply to Hidden]

Sarcoidosis for 40 years, but the main problem is Brochiectsasis for 20 years

[Hidden in reply to skipwork]

I’ll send you a pm

[skipwork in reply to Hidden]

I wish I could go to the Brompton. They refer me to the Princess Royal University Hospital at Orpington.

[cofdrop-UK]

Hi skipwork,

You have had some very helpful advice from some very knowledgeable people with BE.

No nebuliser, PEP, medication or saline will do the job of lung clearance for you as they are all an aid to help loosen the gunk in order that you can do lung clearance with less effort.

I would imagine if you were so unwell that you had to be in hospital they would probably have given you a high dose of a bronchodilator, which would widen your airways and make your breathing so much easier but it would not remove the mucus lurking within your lungs. You might have involuntarily coughed a bit.

I totally understand how you find lung clearance every day quite a burdon. It is but many of us have had to do it for years as it is part and parcel of having BE.

We all have different methods and perhaps you might find it helpful to discuss it further with your physio. For a huge part of my life I had done to me and then did postural draining with percussion. To be honest I still find it the most effective for me but as I have hiatus hernia and reflux I have an agreement with my physio to do PD with percussion in the morning and in the evening I do ACB. I get very little up with the ACB and feels like there is nothing there. I must have done something to move it though as when I go to bed, it then comes up with very little effort.

Please note though postural draining with percussion is no longer even taught by physios to paediatrics with CF/BE/PCD.

You will need to find what works for you. I nebulise a bronchodilator, followed by 7% hypertonic saline, but they are only an aid. I then follow it with lung clearance.

Hope you find a method which suits you.

Cx

[skipwork in reply to cofdrop-UK]

Kind of you. Many thanks. Cliff

[Lyd12]

I have had Bronchiectasis for over ten years now. My routine is to lie on the sofa each day mid morning and do the breathing exercises which brings up the mucous. I only spend about 15 minutes and usually fill three large tissues. Lately I find I am coughing up some mucous when I go to bed, a nuisance but bearable. Do get through a lot of tissues though! Iris x

[Hidden]

That device you mention using in hospital, was it definitely a nebuliser or was it a “Bird respirator”? They’re big old fashioned green things, you’d know if it was one of those. The idea is that air pressure gets behind the mucus & forces it into main airways. Very effective machine but unfortunately you can’t use it at home as it has to be supervised (it can cause damage if the settings aren’t exactly right.)

Bear in mind you may also have been on IV antibiotics & steroids, both of which would dry your lungs out a good deal.

Sorry we’re bombarding you with all this info! Gives you lots to think about tho 😉

[skipwork in reply to Hidden]

Can't remember what kind of device it was in hospital.

[Bardear]

Go onto a Lloyds Pharmacy website. They do some cracking nebulisers and delivery is really great.

I can't remember if they have a Customer Support telephone/email address but if they have you could contact them and ask which nebuliser would be best for your condition. Or ask the chemist/GP/Hospital if they know OR could find out for you.

Failing that you may be lucky in that your GP Surgery/Hospital will lend/give you a nebuliser.

I had to buy one hence my Lloyds recommendation.

LOL

XXXX

[cofdrop-UK]

You might want to check out first with consultant if s/he thinks a nebuliser and what medication would be beneficial to you. It could well be if they thought it was they would give you one on permanent loan. If they don’t think it would be of benefit then you would be wasting your money as the GP may not decide to prescribe the medication.

If your con thinks it beneficial but you have to buy one, please make sure that you get the VAT medical exemption on it.

Cx

[Hidden]

I’m a bit late to the party, but this absolutely sounds to me to more likely be the Bird as someone else has suggested. Dispenses mist like a neb, and even looks a bit like one (it’s loaded with saline to hydrate the oxygen used to drive it), but it’s a form of non-invasive ventilation used in patients with productive respiratory conditions as a form of physiotherapy. It’s particularly helpful if patients are quite ill as it uses pressure to take the effort out of clearance, but it’s also used in those who clearly benefit from it even if not particularly ill, such as my 12yo who has underlying airway issues that reduce the effectiveness of most chest clearance techniques. The reason I firmly say it was the bird over just a neb is because no respiratory team worth anything at all would have a patient with a productive condition in and not do some form of physio. It would be unequivocal clinical negligence. Unfortunately, birds are not provided for home use - we’d jump at the chance to own one - and will be going out of circulation as the manufacturers have decided to stop making the parts or offering repairs. Once the existing ones die off, they’ll be taken out of service and in most instances replaced with a high tech, electronic version.

As per other replies, there’s no point buying a neb without checking that the GP or consultant will supply medication for it, first. The only thing put through a bird is normal saline, and that’s not generally considered therapeutic in and of itself for chest clearance, so if you weren’t on any other nebs whilst in hospital, I’d say it’s unlikely you’ll get ready agreement for nebs without having further discussions with the medics in the first instance. That is just my opinion, however.

[cofdrop-UK in reply to Hidden]

Quote: ‘no respiratory team worth anything at all would have a patient with a productive condition in and not do some form of physio.’

Whist I agree with you Charlie that this should be the case and usually is with a respiratory team. The same cannot nowadays be said for A&E. It certainly was the case when I was a kid but physio was the main part of treatment, even when more abs came online. I think they twig straight away with CF but BE is not on their radar much of the time.

I hope you and little E are out of hospital and on more of an even keel.

Love cx

[Hidden in reply to cofdrop-UK]

I swear, I will PM you in the next few days. x