I’m in fazakely hospital for 3 days because my oxygen levels have gone down. My SATs are normally 92-94 at rest, but they’ve been 88-90. Sometimes lower. I’ve been fighting hayfever (never had before seriously) since June and with the hot weather,thought that was the reason -also very breathless. Contacted the oxygen team- come in today for check. They wanted to give me intravenous antibiotics which meant hospital. This causes enormous complications at home because my husband suffers from anxiety badly. Anyway they persuaded me and family stepped in with husband. However real question, they gave me a nebuliser to use which really helped me cough up mucus. But at moment can’t have one for home. They have made an appointment for 4-6 weeks to discuss.
Anyone got any hints and do others find them useful. I can’t take carbocisteine as it makes my very lethargic. Some people have small travel ones and like them. Could you give of names of them found good. I’m going home in the next half hour - hurrah
Best wishes to all
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Jomo46
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Phillip's respironics innospire deluxe , they are about £97 to buy , they are very easy to set up and with 4 spare filters ,mine has never missed a beat , totally reliable and has made a big difference to my life
Yes, IF you will have a community nurse calling in on you at home, which you probably should have, then they can get them, guess it depends a lot on the areas we are in.
The nebules have to be prescribed so there is no point in buying a nebulizer just yet. You need to know which medication they recommend, therefore it would be better to wait until you see the doctor to discuss.
Sometimes nebulizers are loaned by the NHS, perhaps short term. Probably most people buy their own and in this case it is worth considering the aforementioned Philips.
Pete has a Pari boy that he bought online from Pari. It’s brilliant and he uses it twice a day. He originally had one given by the RBH but doesn’t go there anymore. He decided to buy his own as Pari sell all the spares too.
Pete has sarcoidosis and COPD so the nebuliser is essential. Good luck to you. Xxxx
I have a Phillip's respironics innospire deluxe too, totally reliable and easy to use. Doesn't require any manufacturer servicing either. You will need the nebules prescribing but mine can handle any drug.
I bought from Evergreen Nebulisers in Wigan, next day delivery.
Initially I borrowed one from the NHS, loaned for a month but in reality until mine arrived. Essentially it was loaned to ensure the treatments were effective for me before buying my own nebuliser,it was only ever intended as a short term loan. I was advised don't buy anything under £50, just not worth it.
Thanks Elaine. That’s just how I feel. I’d like to try one for a while to see if they really help as in hospital where I used one for 3 days it was for an exacerbation.
I got a nebuliser from the NHS when my lung function was 40%. My community respiratory team arranged it for me. As my lung function was under 50% so was entitled to one from the nhs. Might be different in different areas. I took saline and salbutamol through it. x
You're absolutely right. I refuse to take anything but the Accord brand of Carbocysteine. It's the only one that does not contain sodium laureth sulphate (SLS) which is known to be carcogenic. Holland and Barrett won't even sell any products that contain SLF. All the cheaper brands of shampoo, bath products contain it. It's what makes all the bubbles and soaps up so to speak. Ages ago, I tried using Mucodyne which is a more familiar brand of Carbocysteine but felt quite ill on it. I telephoned the manufacturers of Mucodyne and got to speak to one of their medical staff.When I asked why they put SLF into the medication because I was of the belief it was carcogenic, He simply put the phone down on me!
I have had NHS nebuliser at home for the last 29 years, I use a Medix Econoneb Nebuliser has a high flow rate which ensures fast and effective therapy every time nebulising bronchodilators (relievers), corticosteroids (preventers) and antibiotics, I am really surprised that people find it so difficult to get the NHS nebs, as I have always had one on loan to me! You have be careful when buying a pump because it has to able to disperse the medication you are required to nebulise, as some medications are molecularly heavier than others, so if your nebuliser is not up to the job, it can take a long time to actually inhale the medication, ie, gentamicin is heavier than salbutamol so takes longer but if you use a turboneb that has a more powerful pump then it is quicker I use Gentamicin daily, and sometimes have to use colomycin (depends on the availability of gentamicin) if you have do buy your own pump does that mean you have to supply all your own nebuliser tubes and mouth pieces/ masks etc? I have all mine supplied from my chest clinic. I live in Plymouth, Devon our hospital has always given all the equipment to patients who require them. Yes it has to be arranged and signed off by your chest consultant, but never had a problem with the system here. When I need a travel pump I have always had one loaned to me from my chest clinic. I guess it must depend what NHS are you fall under and what their policy is on loaning the equipment to patients, not everyone will be able to afford to by this equipment as they can be very expensive. What I would say is look for a machine that has a high 'Nebuliser Flow'
It refers to the value of the pressurized air flow rate determining the vaporization rate. The best nebuliser has a nebuliser flow as high as possible. Most have a flow rate of 6 l / minute / 1.0 bar, a fairly high value for most substances.
However, if you need to vaporize substances with a slightly higher viscosity,( like Gentamicin/colomycin) you will need a flow rate of 9 l / min / 1.0 bar pressure. The rate or nebulisation rate should be at least 0.35 ml / min. Hope this helps.
I use a Pari Boy which I received from my health insurance when I lived in Germany, it's a great machine, strong and very reliable and I just use saline. I also have a RC Cornet, which vibrates and causes mucus to dislodge. Exercise helps me keep my lung muscles strong, too, so that I don't have a lot of mucus lately. I only have one working lung so its paramount that I keep it strong 👍Have a good Sunday😊🎈
Thanks Brian. I’m home now so husband sitting is ok now. I’m really puzzled though about waiting 4-6 weeks before I can discuss nebulisers. I was trying to clear my chest this morning and it took ages and I think incomplete . I’ve noticed if chest is clear, oxygen levels go up.
Depending on your budget they can go from about £25 to around £100+ - but for my mum I got a new model Omron from Amazon (although I see another really good one their Phillips I think ) because they are faster and although 10 mins extra doesn't sound much, it is when you are doing it 365 days a year and several times a day.
You are right there with the 10 mins several times a day. It took me an hour this morning with no nebuliser and it wasn’t as clear as it was using the nebuliser in hospital
PS if possible, with the hospital or reputable website, do check technical details of the machine type to use for your condition/medication as sometimes the machines have different sizes of nozels etc and therefore (spray - sorry don't know the actual term)
I have one on loan from Nhs. I also bought a mini pari for travelling. Initially I bought an omron for travelling but found it wasn’t powerful enough to nebulise my colomycin. In the end I phoned evergreen, told them which meds I need to nebulise and they suggested the mini pari. As others have said you should wait until you know what meds you will be prescribed before deciding otherwise you make an expensive mistake like I did.
PPS - I just looked up the nebuliser my mum uses - OMRON C28P - it's got a compressor and is under fifty quid from amazon. This website from the medical device company website gives information is not a recommendation but just so you get some information about the type of nebuliser required for different conditions
I bought a portable mini nebuliser (new) on Ebay for £39.99 from "healthcareworld" - the one with the green button on the front. I have used it quite regularly. It is very portable and it works well. It is actually quicker than a full sized nebuliser. A friend bought one, on my recommendation, and he is delighted with it.
Just log into eBay and search for portable nebuliser and the one I described will be shown. It is rechargeable through usb and it really is portable. I am able to fit it into my jacket pocket.
I have an Omron from Amazon. Does the job. I think it was under £50 delivered. You should be home now, I hope your husband is reassured. He must love you very much!
Husband very pleased. - and me. Only problem i had an envelope folder with 4 pages of notes on flare ups, when I took meds and side effects etc. Between my daughter, Bob and me it’s lost. Bob thinks he unpacked it, put it on his desk, had a tidy up\ clear out, put it and others in blue bin which was collected Friday 8 am. He ran round distraught while Lou and I tried to also take blame. I’m trying to rebuild it as much as I can but not easy- such are the hiccups- but we’re. Still here and just been out for lovely Sunday lunch with friends. Thanks for the support
Hi Jomo46, my names Andyhaler ( Andy ) and i've been on the nebuliser at home for a number of years. I am also on Carbosistiene, i was given one by the NHS but when it seemed to be losing power i bought one online and gave the NHS one back. They would have serviced it but given that they are not too expensive i just bought one. The brand is Omron ( comp-air ) and is recommended by the NHS. I also bought a portable battery operated one. The home device was £90 as was the portable one and they are both great machines. A small price to pay for the relief they provide. If you have any more questions please contact me as i would be happy to help. Hope you feel better soon. Just to add, there are many different types and the prices vary but they are on the whole quite reliable.
Thanks for info and offer to get back to you. It seems I should wait for the consultation in 4-6 weeks, but very frustrating. I know £90 isn’t that much , but I was brought up to be thrifty- or is that stingy. Glad they work so well for you. - jo
Hi Jo, hope your consultation goes well. I'm known for being a bit thrifty myself, I would say that we where brought up on a shoestring but that would imply we had shoes😜.
Hia yes can’t live with out my nebulisers. But I bought my own 5 years ago . Much better than the nhs . I used living overseas. You don’t wait for nhs give u stuff . Nice when do so have an other . They give u the stuff put in it . You then go buy a portable one . I have no money here . Live alone . Am basically at the end this COPD but 4 me TB from working in Africa. I do not have these friends & relatives . Am 69 . Have amazing oriental cat needed home . & made bit gdn . Waited a year cateract sent by nhs to wrong place . But Hayho . Also ask pulmonary rehab teach u how breath or lots on u tube . This illness is do it your self . I also use alternative meds . Eat well . Oh you can have just saline put nebulisers. Anyway just go get one . Rgs
Rather than move my NHS nebuliser everywhere I go, I bought a couple of them. One in the car, which can be used with an inverter through the cigarette lighter socket, and one was taken to the south of France by a friend in his car to use if I ever get there.
The model I bought was the DeVilbiss AirForce One which is about £40 on Ebay.
You sound like you can’t keep a good man down. We just keep rolling along- or is that stumbling along. You’re right , sorry to hear what Africa did to you. For me it was glaucoma eye drops causing post nasal drip that was the trigger for sarcoidosis..
Hallo Jomo I just got one myself I live in New Zealand and i bought one for 150 I had to use one in the Hospital and it seemed to help So i am going and try this one I am a bit nerous about using it at home but in the hospital it helped because I hardly could brearth I asked if I was able to hire one but no!!! Hope all goes wel for you
I hope it works well for you. I’m in a bit of a quandary as it seems you need the right type for your condition and it seems I should wait for the consultation. Good luck with it. It’s really hot in England today - bad for breathing, so it’s stay in, keep cool.
Hi, I got a nebulizer from the NHS to help clear mucus. It was no problem, I didn't have to ask for it; the resp. consultant suggested I try home nebulization and gave me saline nebs to put in it. It was the Phillips inspire Deluxe model. I have since bought my own portable one, also by Phillips, which I prefer (quicker and quieter). I also use this for bricanyl nebs when I am having an asthma exacerbation. I think it very much depends on the area you live in / what hospital you are under.
Hope you get to try one out and find it helpful ...
I was given a nebuliser by my hospital team and it’s invaluable . I use it 4 times a day which is a little restricting but well worth it. I try and time it every 5 hours but it’s not set in stone.
The nebules I have are salbutamol and Ipratropium.
The hospital nebuliser is a Philips Respironics, a compact one which sits on my bedside table. It is a little noisy.
I also have an Omron Compair which seems a bit flimsy but is much quicker than the Philips. I bought it when we went on holiday and forgot to pack the original one.
Finally I have a small battery operated Omron which is great for on a plane, it’s silent but it needs shaking frequently to keep it going.
I should add that I have an Inverter in the car which plugs into the cigarette lighter (!) which is great on a journey.
Hi Jomo46 I have COPD and asthmatic symptoms,am troubled with dust and pollen woodburning smoke etc.etc. After 2 hospital stays last year I decided to buy myself a large nebuliser and a small portable one, I have a community matron who calls and she tried to get me one, however it was a big fat NO. I have to date (hope I am not tempting providence here) not used the big nebuliser. On occasions I have used the portable one. My point in this post I also purchased an air purifier which I run in my bedroom at night, as I have a lot of sinus problems and post nasal drip I think this contributes to the mucus. I think it is the best thing I have ever bought I has helped so much with my sinus problem and nasal discharge. If you suffer from polled etc., it might be worth a try. This is the one I bought hope this helps .
JINPUS Air Purifier Air Cleaner for home with True HEPA & Active Carbon Filter, Portable Air Purifiers, Air Ionizer Remove Dust, Pollen,Smoke, Odors.
JINPUS
Sold by: JINPUS
I don't know about anyone else but Summer is not my best friend.
Thanks Jeanie. I Ve thought hard about an air purifier and looked a bit at them. A chemist friend recommended an ioniser as it removes everything from the air, but when I looked it up it says the dust etc is not removed but drops to surfaces saying not a good idea. Do you find that or does the purifying bit collect it up somehow. I have the same sinus problems, post nasal drip, mucus etc.
If you have the time, please let me know if you find the surfaces dusty Or not.
No so much dust in the bedroom so it's doing it's job, I had some decorating done recently and it dealt with the paint odour although he used odourless paint, I was dreading it but managed quite well. There is a replacement filter which it says on the information change every 6 months, but I guess I would probably do it more often, the replacement filters are £10 and bought on Amazon. I put it on an hour before bed and the room smells nice and fresh when I go in and leave it running all night. As I said my sinuses are better not awash with mucus whatever there is there it soon moves with a cup of tea. An I seem to be sleeping better not bunged up when I lie down. And for a bonus my husband likes it....when you have our problems everything is trial and error hope this helps.........
Do not worry about a nebuliser. It is a strong way to get down into your chest. I have a problem with it. One is that if you take it regularly [I am supposed to take it 4 times a day - which I never do] you are prone to shaking which can be dreadful. In one of my shakes in a cafe the coffee went out if the cup and down a lady's back. Very embarrassing. Thank god she was not of the suing type!! Otherwise I find it very helpful. Takes up a lot of space in your sitting/bed room, which can be a problem.
The discussion they want with you is whether it will work. My hospital lent me one for a month before a decision was made. I always say yes to everything. Give it a go and good luck
It can be a nuisance. But I think the nurse said to me that the salbutenol attacks the same thing that controls the shaking. I sometimes think that no shaking is better than
It’s the salbutamol that causes the shakes, not the nebuliser. However, it gets into your lungs more efficiently through a nebuliser rather than an inhaler.
I have a home nebulizer from Brompton hospital. (Asthma Bronchiectasis COPD. 32%lung function)
They service it each year at around the time of an appointment.
I much look after myself with support from Brompton and own GP plus Princess Alexandria Hospital's 'Hospital at Home', for flare ups. All work with Bromptons advice.
I had the flu 18 months ago and could not shake off steroids or keep oxygen level acceptable.
A local oxygen nurse was sent out who said as levels laying in bed were 91%. Couldnt have any!
Trying to get 16ft to bathroom had me gasping with levels down to 80%.
I was advised cant leave ambulatory oxygen (which l always have with Hospital at Home) and had l considered using a comode instead. No l said. I need to get moving!
Changed over bed sides and gradually improved. Slow job and still not back to my norm.
Poor you Janice, but great things have improved. I’m actually a bit better today with these antibiotics. First time for 3 months, sitting down my oxygen reached 94. That have been 78 to 90 recently. Tomorrow my steroids stop . I’m always terribly breathless then. Hey Ho
Ive a sloping bed on loan from Brompton (basically like a folding paste table), you lay with head lower end and do some percussion bangs to lung area whilst laying on side (a pulmonary physio should be able to teach you breathing techniques to accompany) l do it twice daily if productive. Once if not. In the case of a flare up l have slept on it over night. It gives me a bit of head rush on rising so take care!
After doing this chest is able to clear. Basically allowing gravity to work with you.
I dont know if you could perhaps arrange some pillows so that lung area is sloping down toward throat.... also been known to kneel on all fours with backside higher than shoulder....
Just suggestions but may help during your ridiculous waiting time for further help...
Leaving off the steroids is for me a long slow process. Cut by 2.5 per week.
I notice a dip in breathing and a wheeze around day 3, so sit out day 3 and 4 and wait for improvement.... if it takes more days then l wait. But stress, this is what l do, different things for different people....
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