My consultant is going to arrange for me to have a nebuliser. What does this entail?

[Claudine]

I have Bronchiectasis with colonised pseudomonas. He would normally have me in for IV antibiotics and a nebuliser is safer in these coronavirus times.

[sassy59]

It’s a machine to use at home whereby you can nebulise medication via a mouthpiece or small mask. Pete has used one for years and wouldn’t be without it.

Hope it all works well for you. Xxxx👍😀

[Claudine in reply to sassy59]

Gosh, that was quick! Thank you. I feel a bit nervous about it. He gave me the impression I will visit the respiratory nurse at surgery to learn how to use it. In normal times I think he would have had me in hospital for IV antibiotics but is reluctant to take this route at the moment. The nebuliser could be a temporary measure. How many times a day does your husband use it?

[sassy59 in reply to Claudine]

I’m sure all will be well Claudine and, as you say, a temporary measure.

Pete uses his nebuliser twice a day. He has COPD.

Stay safe xxx😘

[Hidden]

Hi Claudine. There are quite a few of us bronchs on here who nebulise antibiotic long term. Usually a course of IV is given to clear out a stubborn bacteria which is not responding to oral antibiotics and then long term nebulised antibiotics are used to keep the bug down. Some of us do our own IV at home but as you are new to all of this that is probably some time down the road. I guess that your con thinks that starting you on nebulised antibiotics is safer than having you in hospital and is better than leaving you without treatment until he can give you IV. Good luck. We are here for you if you have any questions.

[Claudine in reply to Hidden]

Yes, he wants me to take 10 days of Cipro first, by which time the surgery will be ready to see me I guess. My daughter seems to think that while I'm using a nebuliser | should be shielding - do you know anything about this? I know the nurse will tell me but I just hate the thought of no fresh air and no exercise while I'm using this. I always think both of those factors are important for bronchs. How long have you been on a nebuliser? Thank you for your help.

[Hidden in reply to Claudine]

I have been using a nebuliser on and off since 1982 and have nebulised lots of different abs, depending on the bacteria. It isn't any big deal once you get used to adding it into your daily routine. The government guidelines for shielding those with bronch say that one of the qualifications for shielding is needing to use a nebulised for drugs. ATM I am only using mine for saline and ventolin once per day. That is me and the more you learn the more you will discover that we bronchs are all different.

I am shielded by the NHS but really, If I were not on the list I would be doing what I am doing anyway.

I have been going into my garden and I live in a village so I walk my dog around the lanes once per day. Carefully doing social distancing. I am not going to the village shop and certainly not into town. It hasn't been too bad or actually too different to what my children and grandchildren have been doing.

We are vulnerable because of the damage in our lungs. It is nothing to do with nebulising an antibiotic, rather the condition which requires drugs delivered directly into the lungs.

If you read other posts you will see that most people with all lung conditions are deciding how best to protect themselves.

I would add that it would be a good idea if you check that your consultant is a bronch specialist, not just a general respiratory consultant. GPs know virtually nothing about bronch and gen resp cons very little more. He does sound as though he knows what he is doing though.

I hope that helped a bit.

[Clareyg]

Hi, I started nebuliser Colistin last Friday straight after 2 weeks of self administers IV ceftazadime. Mine is made up with 2.5ml salbutamol because I also have severe asthma and ABPA, and 1.5 ml 0.9% saline. The first few days were really annoying and time consuming because I think I added too much saline from the 5ml bottle and it took absolutely ages to go through. I got really grumpy with it. I’ve adapted my technique since the weekend and it now takes about 15 mins to go through which is still a bit too long for me. They are calling me to check on 16/6 with a view to asking my GP to take on shared prescribing responsibility (ie get the drugs supplied to me from the GP budget Rather than the hospital budget. I don’t think that’s going to go terribly well.

I had loads of spirometry tests last week before they sent me home with the kit - full PPE all round. Felt very safe at the hospital.

I’m sure you will quickly adapt to it- I have. I can’t tell you if it works yet it’s too soon but I have it for the same reason as you. Good luck and let’s us know if you have questions.

[kenta in reply to Clareyg]

Hi Clareyg. I get my salbutamol and saline in very convenient 2.5ml ampoules. No measuring out!

[Clareyg in reply to kenta]

That would have been much more sensible wouldn’t it?! I’ve been given 5ml ampoules so then I have to try to work out how much to put into the colistin!! I shall ask fir what you have. How long does it take for yours to go through?

[Hidden in reply to Clareyg]

Hi Clareyg. If I am given 5 ml ampoules I draw up 2.5ml into the syringe and then inject it into the colistin bottle.

[Claudine in reply to Hidden]

Thank you to everyone on this subject. Let's hope that, because it is only a temporary measure, that it's simple and easy. I don't even know what the medication part of it will be yet! Re shielding, I think that because it's a temporary measure, therefore it's just another way of administering it and I will carry on in the way I have been doing.

Thanks to you all my friends and stay safe.

[Jamesmum]

Hi Claudine my son has both those diseases and then some... He uses an ineb which is great cause its not too big or intrusive and you can take it anywhere... That's the one!! X

[Tinker26]

I only nebulise saline ,I find it really easy as it only takes about 10 minutes and I only do it once a day now as my mucus isn't much , don't worry you'll be fine x

[bwp91]

Don’t worry it’s quite straightforward. You’ll be shown how to use a nebuliser and sort the mixture you’ll inhale. Then it’s a matter of regular cleaning of the parts. It takes about 20 mins all told morning and night - or at least it does with me - and is a fag if you travel. But I’ve found it really works. It’s as if the mix really gets down into your lungs and I seem to be much better after using it for months. Of course some people use one all the time and can tell you more. Good luck!

[Mooka]

If you need a nebuliser or are colonised with pseudomonas you should be shielding. You can check this out on the BLF site. I use colomycin twice a day and also use ventolin as I was getting a tightness in my chest. The ventolin does give me the shakes for a while afterwards though. The hospital lent me the nebuliser. I had to buy a portable one for going away. Good luck you will soon get used to it and it’s better than the infections.

[Response]

As many people have written about this, I'm just writing to say you'll be glad of having this as it helps dislodge the mucus (even though it does interrupt your day a bit - having to wash the parts that need washing each time and use a steriliser once a week) and remember to get new filters etc.

I was worried about how to use it at the beginning too but it's actually really easy - (youtube/google can show you). I now actually have machines all over the house actually so that it can be used whilst watching TV etc.

A recommendation: get yourself a fast one (I think they have compressors) - they are much quicker so it will interrupt your day much less.

[DrARDS in reply to Response]

Any recommendations for a particular machine?

Cheers

[Response]

I have Omron NE-C28P Compressor Nebuliser (and you can get spares from their website.) It would be best to check with your consultant or respiratory nurses/tea. There are cheaper ones too. I also have a portable one that's in the car for emergencies e.g. if the car broke down and ad to stay somewhere (a bit catastrophizing!) but although they are more expensive it might be worth having one later in case you go on holiday or week end breaks.

I bought the Omron ones from Amazon as they were good value for money (about £40) but they've gone up since COVID-19 to about £55.

(only use prescribed saline though - as sometimes it's advertised on the internet but it tends to be stuff for sewing machines etc!)

[Claudine]

I didn't realise that there are different machines to do the same job! I don't feel inclined to buy one just for this temporary situation though. I'll have to wait for my respiratory nurse appointment I guess.

[Balloo]

Best thing u will ever have used one which I bought . For years just need keep clean . Change the mask regularly.