on rescue doses (10-12 puffs through spacer) of salbutamol every 3-6 hours for tightness, coughing and spluttering and breathlessness. got prednisolone and on maximum serevent and flixotide.
Not ill enough for hospital treatment as rescue doses are working, but too poorly to do anything other than sit on the sofa.
I hate this stage - doctors think I'm taking the p*** because I don't wheeze and never have, but I really don't feel well.
Ugh! Just a rant really. I really, really hate these prolonged 3-5 day general ""not right""ness.
Had steroids form AnE and a chest infection on top on Penicillin 500mg
sofa sitting again.xxxx
sorry to hear you're feeling pants too.
thinking it might be the weather... ugh. what a lovely way to spend the school christmas holidays (i'm a teacher!).
what other strategies (apart from sitting down and living the spacer lifestyle) help?
Hi, I am sorry you are not feeling great especially as it your holiday time from school! I dont really have any strategies but I feel the same as you. I have had to up my nebs again from two to four & I'm constantly on my inhaler. I dont wheeze either & Drs always listen to my chest & say 'well your chest is clear as you dont have a wheeze!' GRRRRRRRRRRR. My chest is aching so much tonight I have taken painkillers. I can a visit to my Dr tomorrow but what else can they do?! Sorry I didn't mean to moan about myself, just wanted you to know you are not alone! On the plus side there is loads on the tele right now so rest & keep warm!
S.Mama
yes i know how it feels and it horrible, i am struggling to breath everyday as i have also never been a wheezy person apart from when i was a baby, i swear when i go to the doctors that they think i am making it up or making it sound worse then it is when i am not, meds are not working but they still dont see it bad enough to get a refferal done to sort it anyway, despite it affecting my daily life, cant even walk without struggling to breath, and yet they still wont do anything and have to battle to get treatment and i dont cope, everyday is hard
Oh dear Jeremykitten am sorry you are feeling poorly sick, its horrible the 'inbetween bit'. Its a fine line and hard to decide when to go in. It must be so frustrating to not be taken seriously because of the lack of wheeze too. I used to be a non-wheezer and have noticed a big difference in the way I'm treated in A&E since becoming a noisy wheezer. Now I'm straight into Recuss, Critical Outreach Team bleeped and drips in before i can blink, before I was just left in a corridor as a non wheezer till blood gases came back then was wheeled straight in to Recuss.
Its wrong really because I think i'm poorlier when my wheeze is less but am treated quicker when i'm a wheezy one than when i'm not wheezing! On a positive note for yonks i was a non wheezer but then suddenly i changed and became a right little noisy wheezer, so maybe you'll develop a wheeze and get taken seriously!
Hope you start to feel better soon and can start to enjoy your hols rather than just having to be sofa bound. Take really good care and try not to leave it too late if you need to go in, let us know how you are, love Lois
I know how you feel i have been struggling for awhile but everything turns out ok eventually i had to keep perservering with my doctor and eventually i got there hope you get better soon
Amy xx
Hi Jeremykitten2
I know how you feel. as a non wheezer, i too get it all the time.
""Your not wheezing"" I never wheeze and when i need a and e its a nightmare.
One time the dr asked me what i wanted her to do? DUH! I told her i needed to have nebuliser!
When she came back as i finished the neb, she said Oh I can see your better now! My husband couldnt believe it!
Do speak up when you're not feeling right, you know your own body.
When you feel your ready for hosp you go .
I wish you well soon
xxx
angeljacqui
at the inbetween GP & hospital......
hello there,
i've just stumbbled across this site and just from reading your thread, i have decided to join. it looks like a good place to get things of your chest (excuse the pun).
i have just discharged myself from hospital for 2nd time in 4 weeks! really cant stand the place, and cant see why the doctor feels it necsasery(?) to keep me in for more than 2 day's! the place is so depressing, the air is so dry, and the heat, well thats just a joke. i keep asking for a nebulizer at home, but the consultant wont let me have one. she say's "" if you are on the nebulizer at home, then you should be in hospital"". yet the patient in the next bed to me has a different consultant and is allowed a nebulizer at home! this i find very frustrating indeed.
i have checked out a few websites that sell nebulizers, and they pretty reasonable prices. so i have decided to buy one. but, there is a catch..........................my own GP has to get permission from my hospital consultant BEFORE he can prescribe me the relevant medication for the nebulizer!! WTF is that all about???
i dont want to be in hospital useing nhs resourses and taking longer to recover when, i can be in my own surroundings which is better for my recovery.
so, i shall persevere with the home nebulizer situation and let you know how i get on.
in the mean time, i hope you dont mind me joining you ""at the inbteween GP...."" stage and i would like to take this oppertunity to wish you a very happy and healthy new year.xx
p.s i dont wheeze either. x
much better today, thanks. just needed 2-4 puffs, rather than 10-12. taking the chance to sit and watch 'just william' back episodes!!
big hugs to everyone else feeling rotten - here's hoping 2011 sorts this bloody weather out and consequently, our lungs!!
:o)
Taylor,
I have copied this from another post made by another AUKer on the subject of home nebs, she was also a doctor. I hope it goes some way to explaining why doctors are so reluctant to give out home nebs and why most people have numerous admissions, and try many different types of medication before being prescribed them.
From EmH's post.
""The decision to give someone a home nebuliser is not one that is made lightly, and will usually be reached by a hospital respiratory consultant in conjunction with the patient, the GP and other healthcare professionals such as respiratory nurses. It is powerful medication and it can be dangerous if used incorrectly.
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. There is some risk inherent in this strategy, and many of us who are in this situation will have experienced attacks when they have not sought help in a timely fashion because they have a home neb. The risk has to be balanced against the quality of life issues if the patient does not have a neb at home.
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. The large majority of asthmatics, if they are ill enough to need nebs, should be in hospital. It is a very small minority of asthmatics who will benefit from and be safe to use home nebs.
A good proportion of the deaths that occur in this country due to asthma are entirely preventable, and occur because people have underestimated their symptoms and have not got themselves into hospital quickly enough - and a lot of these are associated with the use of nebs.""
I hope that helps explain why you have not been given a home neb, when others at your hospital may have been given one by other consultants. I know that within the respiratory team at my hospital there is a diversity of opinion on the value of home nebulisers.
Hope that you get some much needed control and normality soon.
Em
I know how you feel, Jerry,
so I hope some relief comes soon.
Whenever I have a chest infection it can last up to three week
because of my doctor not wanting to prescribe antibiotics at the right time...
which is usually when I get an emergency appointment to ask him.
The next time round, I'll be phoning an ambulance....
Jeremy Kitten I hope you are soon feeling better.
Taylor a nebuliser is not an easy answer it creates more problems than it solves. Yes they are useful but in the wrong hand they are an unexploded bomb. I have my own nebuliser at home and quite frankly I hate it but, it has on occassions saved my life. I have severe, difficult and very complex asthma my nebuliser was given to me to improve my quality of life because despite masses of medication I remain symptomatic and my asthma is in the words of my consultant fragile, I go off quickly without it I would end up in hospital every month and because my asthma is unstable I use it regularly during an exhaserbation to keep me a little more stable as that's the time I am likely the ""crash"" however I am under the care of a GP, asthma nurse and an excellent consultant. A nebuliser should not be an option until all avenues are tried.
In addition I have a very strict protocol which I must keep to.
Hope you feel better soon JeremyKitten and everything resolves itself soon. I know the feeling, I have been in the inertia of this for a while now and have been keeping a closer eye on things.
And Taylor, I have to say, I agree with what the others are saying about home nebs. I know it is frustrating when you are going through so much and spending so much time in hospital, trying to get the meds but being told no. For about 6 months I had to go through something similar, except, my GP wanted the opinion of the consultant before he could go ahead with it. I was lucky in one respect as I was afforded the meds for quality of life reasons, but on the other hand, it is a double edged sword and I have very strict protocols and instructions and know if one neb isn't doing it, I have to go in, like it or not. Please don't feel like we are ganging up on you, we do understand that it is frustrating that you really want to try something but are running in to barriers, but it really is for your own good.
x
Hi winged angel and to wherrers,
I have just read your replies about home nebs.
I'm on nebs 4 times a day and I have to say this worries me a bit as the consultant at my last overnight to a n e put me on it going home.
That was over 4 weeks ago. I feel like i'm just hanging in ther til I get to see the respiratory consultant on the 6th Jan.
I wasn't given any instructions about when i would need to seek help only told if I got worse to go back?
After reading the reply I worry should I be on it at all?
angeljacqui
xxx
I wouldn't worry too much. You have a consultants appointment coming up and you have a chance to ask them and voice any concerns you have. You will be able to ask them if there is anything else that you can try for example - you dont mention what medication you are already taking. Just keep a super close eye on peak flows and if you notice nebs aren't giving you as big an increase, not lasting as long then it's worth going straight back to GP just to get checked out.
Hope consultants appointment goes well and feel free to ask any questions you want about home nebs/ consultants appointments etc as a lot of us have been in the same situation before.
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