On friday, I went to see my local asthma nurse I was having a rough week, i.e. using an entire Ventolin MDI in a week, not good
Anywho, she listened to my chest, heard no wheezing (probs due to me emptying half an inhaler down my throat that morning!) said I was fine and told me to stop panicking, nothing is wrong with me, all in my head, blah blah blah...
BUT!!!!
Two days later, I was dragged to A&E where i was nebbed, with no success, and so was kept under observation, with IV Magnesium and hefty amounts of prednisolone and salbutamol. I was then admitted (only for one night though, but first ever) and was on regular nebs of salbutamol and iprotropium bromide thourghout the day and night with oxygen inbetween... I have now been put on longer-term pred than usual, an atrovent inhaler, and nebs at home for the first time.
So:
1) What is the best neb for it's cost that is fairly portable, i.e. not huge and solely mains powered
2) Was the asthma nurse right in her assumptions that I was ok? Or was she negligent/not patient enough? Or do I just have an unpredictable form of asthma?
What a nasty exerience. I see you are Devon based as am I which costa did you end up in? I assume they have given you a nebuliser to use for now.
Bex
sorry your having a rough patch it may be that your chest is just having a unsettled period. Can't advise re neb machines as although mine is up and down don't have nebs just eat ventolin at mo.lol It could be that your chest was bit better when asthma nurse actually listened to it be it due to ventolin or not its difficult sometimes. Suppose that sometimes as others have said we forget that asthma nurses are only human and sometimes we actually need to say how much ventolin we are using. I take it you are under a consultant as well for your care? If not prob worth asking for a referral.
sorry your having a rough patch at the mo, have read back through your posts and no where do u say if you are under a respiratory consultant so main question is are you? if not, then if i was you i'd ask for a referral as home neb is a big step and there are options that can be explored before this
with regards to your local nurse, can not comment as don't know you or how you were presenting as to be able to say if she was right or wrong in her assessment. all asthma can be unpredictable at times dependant on other factors.
so in conclusion if you haven't been to see a respiratory consultant before and haven't been referred after your recent trip to a&e ask your local asthma nurse for a referral before u go to the expense of buying a personal home neb and get your asthma and treatment properly assessed
Hi Crazybaby,
I'm sorry to hear you've been having a rough time recently, it does sound unpleasant.
In terms of what the asthma nurse said, without having been there at the time and listened to your chest myself, it's impossible really to know whether she acted appropriately. Sometimes people can have asthma attacks that come on with little or no warning, so it may be that it would have been impossible for her to predict.
In terms of your other question... I'm really *very* surprised and concerned that you've been given home nebs at this point. Using nebs at home is a very big step that is usually only considered in chronic severe asthmatics, either as an emergency measure (ie to use whilst waiting for an ambulance if someone has very sudden very severe attacks) or as a quality of life issue if someone would not be able to be out of hospital very often without a nebuliser. It is certainly not something to be entered into lightly, and, if used inappropriately, the use of home nebs can actually increase the death rate from acute asthma attacks. Those of us on here who have home nebs have usually been given them after a lengthy period of assessment by a respiratory consultant, and usually after several admissions, and have a very strict management plan about when to use nebs and how frequently we can use them before being admitted. Most people who are on home nebs have also tried pretty much every other class of asthma medication before having to resort this.
The normal protocol whenever someone on inhalers is admitted to hospital would be that they should be stable on their discharge medication (ie back on inhalers and off oxygen) for at least 24 hours prior to discharge. Every hospital that I have worked at, and every hospital that I have been admitted to as a patient, have followed this protocol. I had very many admissions over the course of several years following this protocol before I was allowed to use a neb at home on a regular basis. I am very concerned that your hospital doesn't seem to have stuck to this protocol on your first ever admission - I would have thought that if you were admitted unwell enough to need IV magnesium (a fourth line treatment in acute asthma) and are still unwell enough to be requiring regular nebs, then you are not over the acute attack and you should still be in hospital.
As far as buying a nebuliser goes - it shouldn't be necessary. If a respiratory consultant feels that you are in need of a home nebuliser, the hospital will loan you one. Some of us do end up buying nebs as well, in order to have one which is quieter/more portable/battery operated, but it shouldn't be necessary, especially at first. Presumably if you are unwell enough to need to be nebbing regularly you will not really be able to go out the house much anyway?
I really would urge you to go back to your GP as soon as you can and get properly assessed, and raise some of these issues. From what you describe, it sounds like you may have been treated inappropriately and even dangerously.
Hope this helps
Em H
hey guys
firstly, thanks for the replies to my moan!
Bex: in answer to your question, I ended up at the North Devon District Hospital, nowt too fancy but it does the job!
A few of you asked whether or not I am under a respiratory consultant: the easy answer being no. I was under one a few months back, when I had all the trouble with the pneumonia/ARDS etc have seemingly been discharged. My GP told me he would ""drop her a line"" but I have heard noething from either of them and so presume that didn't happen. I have been very confused as to what to do from here so I think the general concensus suggests me getting a referral?
With regards to the neb, I know it is a bit step, and was pretty shocked as has been mentioned on the forums numerous times that it is the severe asthmatics that get them ocassioanlly, but I do not know what my ""classification"" is at all. I have had to have several nebs before now and assume that maybe my respiratory history backs up the idea of giving me one?
I have the nebules on prescription and have a machine on loan from the surgery for a week, and although I know that it may be a rash thing for me to do, I'd feel a lot safer, as would my family and friends, if i had a neb at home: as you are possibly (or not) aware, I am very reluctant at the best of times to take my inhaler (apart from now, i think i got a scare :S) so i would certainly not use a neb ""just coz its there"". I am a v active person and like walking on the moors and that kinda thing and can get quite severe attacks anytime, anywhere, and quickly, and having even jst a portable battery operated one would stop me worrying about having a bad attack on the middle of nowhere, when i know for a fact that my regular inhaler can very often do jack-all.
Like i say, it was a bit of a shock to have taken this big step and realise that maybe and largely it will be unnecessary (hopefully) but nevertheless i think it might be sensible, at least for the time being until i can gain control, else i'l really be in costa every weekend...
I'm not panicking about it in anyway, and dont think that i'l become complacent about my asthma for it - but i do feel more relaxed knowing that if i have a bad attack, its there, and if it doesnt help, then i've got a point at which i know i need to go in.
Does any of this make sense or am i rambling?! I am very hesitant to see either my GP or the afore-mentioned nurse so may consider changing practices altogether and see what happens?
cheers guys
emz x
CrazyBaby, I am just immensely confused and worried now.
With the troubles you have been through with your lungs I really would have expected you to have been under follow up from a consultant respiratory physician for a good while, and certainly not just left discharged after a few months. As a doctor this really does worry me.
As does you being discharged from hospital on home nebs after your first admission for asthma, when you have no regular history of requiring nebs (you mentioned previously that you'd been to A&E for nebs a few times but never been admitted), and when you hadn't been off oxygen for more than 24 hours. As EmH points out this is nowhere near standard protocol and again, I find it very worrying that you just seem to have been left to find your own way. I also wonder why the hospital did not arrange for you to have a nebuliser machine, and left it for your surgery to loan it to you. What follow up do you now have arranged?
As regards being an active person and enjoying your activities - yes I agree with you on principle. However, it's a balancing act - I am also an active person but I have to accept reasonable limitations and make adaptations (that I find frustrating) to ensure that I am safe and that my family know I am safe - until my asthma is under better control and my family and I don't have those worries any more. I think immediately assuming the idea of having a neb to hand is a good plan is dangerous and could place you in some very tricky situations if you see it as a good safeguard. It's not - it only buys time and, as has already been pointed out, home nebs are usually only given after a prolonged and rigorous assessment, and after considering all other options. They need to be given as part of a strict management plan that's tailored specifically to you. At present time, if you are getting frequent severe attacks which is not your norm (by your own confession, as you have never been admitted before) then you need hospital assessment and close observation until things settle down again.
My confusion has been neatly summed up by CathBear below, except for one point:
If you're reluctant to go to your GP or asthma nurse, how do you expect to get nebules for the home neb you want?
Crazybaby, I'm very surprised and absolutely *appalled* that you aren't being followed up by a respiratory consultant after your experiences earlier this year. It goes against every recommendation about managing respiratory disease that I've ever heard. The BTS recommends that every asthma patient who has *ever* been in ICU is followed up indefinitely.
I too had pneumonia and ARDS and was in ICU for seven weeks in Feb - March of this year and was in hospital for two months after that for observation and rehab. I have been followed up very closely by my respiratory consultant ever since then to monitor for the possibility of post-ARDS lung damage and deterioration in my asthma. I can't understand why you are not being, especially after the problems you've written about with empyema and pleural effusions.
I don't think your respiratory history 'backs up the idea' of giving you a neb at all - if anything, the fact that you have been so unwell in the past and can deteriorate so quickly would make me worry even more about you using a neb at home without medical supervision. If you do have any damage to your lungs following the ARDS, you could potentially decompensate and become very unwell very rapidly - I do think your management in an acute attack should be focused on getting yourself to hospital as soon as possible.
In terms of being a very active person - I am glad that you can be active enough to walk on the moors and so on, it is certainly not the norm to recover to a good exercise tolerance so quickly after ARDS - but I would share Cathy's concern over this. We all want to be active and push ourselves as much as we can, but you have to consider the very real risk of pushing yourself too far and triggering an attack. If you are out on the moors in an isolated place and you suffer a severe attack, having a neb may well not be an awful lot of help to you. After all, you said yourself that when you were admitted the other day, your attack didn't respond to nebs and you had to be given IV magnesium. For your own safety, I would think very carefully about going anywhere where medical attention is not easily obtainable.
Please do go and discuss these issues again with your GP - I am very concerned that you are not being managed in a safe way.
Em H
Seems I'm not the only confused one then!
After the episode in ITU this year, I was under a respiratory consultant as i was still having regular-ish x-rays and blood tests, but I have not seen her for a while now and the registrar i saw in her place on occassion seemed confident in discharging me upon the consultants approval. This was a good couple of months ago and I have not heard anything, thus kinda assuming I am now longer needed to be seen by her.
The admission for my asthma this week was only for 24 hours and this was for a good 16 hour attack before i agreed to go in: i admit that, whilst on the MAU, i did have a very rough night indeed, with constant nebs of salbutamol and atrovent, and i didn't think i would be discharged so readily after such a night - i was surprised when they let me go, as although my peak flow was better than it had been, it had been up and down quite severely throughout the previous 24 hours and was still not 100% - i was also slightly still short of breath, although greatly improved. They were quite happy to let me go with a bag of new meds and let me get on with things.
Now because of their ""casual"" way in which they discharged me without monitoring me on normal meds i.e. only seretide and montelukast with normal ventolin MDI, with a neb etc, and from all your responses, I am very wary of using the neb (although i admit i did last night as a last-ditch attempt after my inhaler wasnt relieveing the attack, and it worked and that was that), although i have the nebules on repeat prescription, and teh doctor at the hospital saying that i should use my inhaler and if no better, use the neb, if not better, see a doctor kinda thing.
I am genuinly scared of the next attack, which is imminent, and im sure this is no different to the majority of people on these forums. I have been messed around so often in the past with treatment and medication with regards to my asthma that i now do not know where to turn. I am regularly in tears over the fact that perhaps all isn't as well as it should be with me anf it really frightens me that I wont be able to do the things I want, when i want to do them. I realise that after problems such as mine that i have to slow down and take it easy but it is still so difficult, especially when i am in such an amount of denial about the whole thing, i.e. why me, it'l just go away, etc.
I have never had a doctor or nurse sit and write an action plan with me, or discuss tests or referrals or even which inhaler devices i get on best with, let alone discuss the need for me (or not) to have a neb at home.
I am so confused, scared, and in need of some confidence in myself over the whole issue. I know i should go and see my GP, and i will asap, but if i don't get the clarification then, i dont know what im going to do.
I am confused too. You had your 1st overnight admission but you were in ITU earlier this year?
I would leave a neb well alone if you don't have an action plan, there is far too much danger you will neb when you need to be in. A friend who works are North Devon is amazed they discharged you with a neb, no follow or plan.
Bex
I was amazed at my discharge too.
Bex, I was admitted to ITU this year for a number of weeks, but it wasn't for my asthma, this weekend was my first specific asthma admission. Hope that helps clarify things a bit!
Please someone correct me if I'm wrong here. But I thought nebs were given to people who have regular prolonged admissions and would spend alot of time in hospital if they didn't have one at home. I have a different lung disease but when I was considered for a home neb I had been on 40mg of pred a day for 2 years and oxygen 24 hours a day for 2 years. I had had regular admissions some lasting upto 3 months yet paediatrics were adamant, if I needed a neb I needed to be in hospital, it was only when I was transferred to adults was it considered. And only then under strict instructions from a skilled resp cons, my GP had nothing to do with it and still doesn't. I was told by my consultant not to push my luck else they would be stopped and told where the cut off point for sats was. Upto now (3yrs on) I haven't miss-judged any of my admissions and always got help at the right time. That is a big concern for new neb patients.
From what I remember Crazybabe, you were admitted to ITU for a serious lung condition. (SARS & An infection?) Many Lung conditions can be interelated! Did you have any guidance when you were discharged from that episode of how to manage your asthma?
Also regarding nebs - doctors and consultants are very strick on who they give home nebs to. Like TKS says, prolonged periods of chronic symptoms & multiple admissions. Many years ago, before I had proper guidance I ended up seriously ill because I relied on my nebuliser too much before getting help.
There are many other options to consider before getting a home neb.
Preventers are a much safer option than relying on relievers.
Kate
You are right, Kate, that most lung conditions are interrelated, and getting pneumonia and ARDS [not SARS - don't want to spark a national public health crisis ] could certainly have an impact on asthma and make it more difficult to control. That's why I'm so surprised that no follow-up would be offered in this case - BTS recommendation is that any asthmatic who has *ever* been in ICU with respiratory illness should be followed up by a hospital respiratory physician indefinitely.
Just to reiterate and clarify, regarding home nebulisers (as a couple of people have PMed me expressing confusion).
There are two main reasons why someone would be given a nebuliser at home:
1) If someone has attacks that are so sudden onset and severe that they need to be able to use a neb while they are waiting for the ambulance - this is very rarely the case as the vast majority of people will get as much benefit from 10 - 15 puffs of salbutamol inhaler via a spacer. If someone has a neb for this reason, they should only use it when they have called an ambulance and are waiting for it to take them to hospital, and their GP should keep a close eye on how many nebs they are getting through to make sure of this.
2) Occasionally, someone with very severe asthma who is already on pretty much maximal other treatment will find that they respond so poorly to inhalers that the only way of keeping their airways open is to use nebs fairly regularly. In order that they are not in hospital all the time, for quality of life reasons, they may be given a neb to use regularly at home. This usually happens after many hospital admissions for asthma, and after attempts whilst in hospital to get the patient off regular nebs by adding in other medication. No-one should have a neb for this reason unless they have exhausted all other treatment options without success.
In both these cases, the patient will have very strict protocols about when they can use the neb, how frequently, and how often they can use it before they have to go to hospital. Giving someone a neb at home is always done with a lot of thought and caution on the part of the doctors, and has to be very carefully considered.
There is a very real danger that someone who has a neb at home will have a false sense of security about how easily their asthma can be treated, and will keep nebbing when they really should be getting into hospital and having other treatment. In a severe attack, nebs will often not work alone, and other treatments like IV hydrocortisone, IV magnesium and IV aminophylline may be needed, or even, in an extreme case, intubation and mechanical ventilation. By the time someone gets to the stage where nebs aren't working, they are usually extremely unwell and need to be in hospital very quickly.
A good proportion of the deaths that occur in this country due to asthma occur because people have undersestimated their symptoms and have not got themselves into hospital quickly enough - and a lot of these are associated with the use of nebs.
In my own case, I initially had a neb for the first reason, and my GP and consultant discussed it at length before I was allowed one to make sure that they agreed that I would comply with the restrictions. After a while, we noticed that occasionally my sudden onset, 'brittle-style' attacks would settle with two or three nebs, so my consultant agreed that I could occasionally use it at home to settle an acute attack and not come to hospital. It was only after several years of brittle asthma, when I was on virtually all the available medication for asthma, and was having recurrent admissions when I would struggle to get off nebs, that I was finally allowed to use nebs regularly at home. Even then, there were very strict rules about how many I could have before going in to hospital.
As Kate says, it's often not easy to make the judgement, and even though I am a doctor and an experienced brittle asthmatic I have still sometimes got it wrong in the past and stayed at home for longer than I should have done. I can think of a couple of occasions when I have been ventilated that might have been avoided had I come in sooner - and if I had not had a home neb, I would have had to come in sooner.
I hope this goes some way to explaining to folks why doctors dislike home nebs so much!
Em H
I was given my first neb as a child by a consultant and have strict rules to follow about when to use and when to get help even now i use my ventolin inhaler as a first line treatment route if i'm not too wheezy.
I wish my GP surgery had nebulisers available for loan as you say yours has. Having had one for twenty plus years i have never been able to get a emergency loan one from anywhere in the community(GP respiratory nurses etc) when have done stupid things like pour coffee in my own.In fact when have needed a neb in the GP surgery have used my own machine as they prefer the 10 puffs through a spacer more than that then off to hospital you go approach. Aparently in this area the only way to get a loan nebuliser is through the hospital respiratory clinic/ward due to the need to ensure correct usage and followup.
Many GP surgeries used to have nebs to loan, often for short term loans, but I believe this is becoming increasingly rare.
I think this is due to a combination of the fact that recent evidence has suggested that for the vast majority of people, ten - fifteen puffs of salbutamol via a spacer is more effective, together with the fact that it is becoming increasingly clear that access to a home nebuliser without guidance and close follow-up from a respiratory team is dangerous.
Hospitals certainly do have them available for loan, but, as we have already said, usually only under certain very strict conditions.
Em
Crazybaby, most (if not all) of what you are saying makes no sense. Some of the treatments that you have mentioned are standard American treatments but not so here in the UK. A lot of what you are saying seems remarkably similar to stuff that has previously happened to other AUK forum members. And the timings of your admissions mean that you appear to have gone straight home from ITU, with no time spent on the ward! No matter how bad/full a UK hospital was, that would never happen.
Peaksteve
I was admitted onto ITU the day after St Patricks Day in march of this year. I was on ITU for 8 weeks. I then spent a week on a standard respiratory ward, and a week in a local community hospital for rehab.
Everythin I am saying is the truth. I'm just as scared and confused as the next person, and only want some advice. Maybe I should just accept I'm meant to be this way and deal with it.
So, that's a 10 week hospital stay - meaning that you left hospital around the 27th May, having been on ITU until May 13th.
However, you posted on the 16th May:
""I have just come out of hospital after a seven week stint...""
Too many people have PMed me to question the timings of your stay on ITU, and the fact that since you first mentioned it you seem to have gained an extra week, and the additonal fact that since we questioned you going straight from ITU to home you have started mentioning two weeks in hospital but not on ITU which you'd never mentioned before.
Either you were admitted before St. Patrick's day, or your stay was shorter than you think it was! Many of our regular posters know just how easy it is to lose track of time when you're hospitalised.
So, that's a 10 week hospital stay - meaning that you left hospital around the 27th May, having been on ITU until May 13th.
However, you posted on the 16th May:
""I have just come out of hospital after a seven week stint...""
Too many people have PMed me to question the timings of your stay on ITU, and the fact that since you first mentioned it you seem to have gained an extra week, and the additonal fact that since we questioned you going straight from hospital to home you have started mentioning two weeks in hospital but not on ITU which you'd never mentioned before.
Either you were admitted before St. Patrick's day, or your stay was shorter than you think in was! Many of our regular posters know just how easy it is to lose track of time when you're hospitalised.
Yes, I'm afraid I'm getting confused over it too.
I just want to make clear that no-one is attacking/getting at you or accusing you of fibbing, it's just that in order to get a clear picture of where you're at at the moment we need to put things into perspective.
Perhaps if you run over the details of what's happened to you again it might help clear things up?
I'm still very worried about your recent admission and discharge too - it would appear from what you've told us that you've received some very substandard care and have been left to go your own way with very little guidance on how to go about it.
CathBear
Hi Crazybaby,
Hope you are feeling a little bit better tonight.
In answer to your question about recommending a nebuliser I can thoroughly recommend the Omron Microair. It’s reliable, portable, small and silent in use. Mine’s been everywhere with me from the top of Ben Nevis to –its more usual place – in the bottom of my handbag somewhere in a classroom or lecture theatre. It will fit most smallish sized handbags/rucksacks upwards.
However, concerning the use of nebulisers in general - a hot topic on this thread!- I still have regular discussions with respiratory doc/prof and a strict protocol about how many times I can use my nebuliser if I’m sliding downhill so to speak. Had one last week in fact after sliding downhill more quickly than I’m used to, resulting in a change in my protocol concerning neb use and other drugs.
As others have already stated I can’t stress enough the importance of asking your GP for a referral to a difficult or specialist asthma clinic, a place where you can discuss the issues around nebuliser home use, current medications and investigations into other new treatments that could help.
Another good reason to get a referral is that of cost. If your respiratory doctor decides that a home nebuliser would be beneficial the PCT should fund the price – mine did. Nebulisers aren’t cheap.
Perhaps the most important reason for referral is that you will come into contact with asthma respiratory nurses, docs, consultants etc who are used to supporting patients with ‘difficult’ and all sorts of asthma including those who suffer from a combination of asthma and other lung/medical problems past or present You'll also get to meet and talk with other patients who might not have exactly the same problems as you, but similar. Again all adds to the support mechanism, which, in my book, is as useful as the medication.
As to whether your asthma nurse was ‘right in her assumption…’ she probably was at that point in time, if you didn't tell her about the amount of ventolin you'd been having to take. although her bedside communication skills did sound as if they had gone to sleep.
Unfortunately, as we all know asthma is SO unpredictable and often within a very short space of time.
But if you are regularly and carefully monitored – as happens in these sorts of clinics- the respiratory staff will get to know you and your asthma and will support you in what to do – a protocol - especially if your asthma does become or is ‘unpredictable’
It can be very frustrating trying to muddle through on your own. At best you never get to reach a ’personal best’ in terms of your response to treatment, access to new treatments and overall quality of life. At worst…well you can imagine the scenario.
I’ve found the AUK forum and members supportive, knowledgeable, and friendly, but this one, like any other forum can be compared in some ways to a virtual learning environment, in that information can be exchanged and discussed – sometimes hotly debated! - as a means of communication across many individuals and countries. The AUK forum can’t and isn’t meant to substitute face- to- face personal interaction with people who will be able to help you in the most practical way you need though Crazybaby.
I’ve included a link to asthma protocol as an example of the way in which a specialist asthma clinic could help you.
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] could certainly have an impact on asthma and make it more difficult to control. That's why I'm so surprised that no follow-up would be offered in this case - BTS recommendation is that any asthmatic who has *ever* been in ICU with respiratory illness should be followed up by a hospital respiratory physician indefinitely. 
Late onset asthma confusion 
do I start my rescue meds? 
Bruising from high dose steroid inhaler 
Using Fostair 100/6 & Ventolin Advice 
