*TRUE SEVERE's* When going down hill

This isn't for emergency advice firslt and aiming at the true severe/brittle

I have never been told when I need to increase steriods when peak flows drops or get more problems so just been doing the hold off on steriods but neb more and reguallary. Anyway recently I have been able to pick up the deteriation before green man get me. The most recent admission I upped steriods and nebs 3 days later still no better rang nurses at hospital they said needed to be assassed my GP when Ive tried in the past said ring Southampton. Ive felt not sick enough for ED but need something and then there's the whole if I go in it will be just nebs and pred which will have done as wont be realy struggling.

So what would you do if you know going downhill, Medical admission via GP if get one, ED or wait until struggling? At what point do you say ok costa it is?

17 Replies

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  • It is difficult to know what to do isn't it- I don't have a definite plan either.

    I start on oral steroids when my peak flow drops below 50% (for longer than a little blip!) or I have a cold. I would go to hospital if a couple of nebs didn't work. I can do a direct admission to the resp ward.

    I guess you are more wondering what to do when it is not a real acute attack but you are struggling at home! Not sure I have any wonderful ideas to suggest.

    Hope you are OK at the moment.

    Bryony

  • for me avoiding a real crash and a prolonged costa visit I will always consult with gp or cons, if they advise an admin for 24 hrs to get IV drugs then I will usually follow that advise, but tend to do when I have doubled symbicort, on max pred, home nebs etc and all with no real improvement as there is only usualy one outcome at the end if I leave it...

    Snowy

  • Hit the nail on the head... not coping at home, My problem is mainly lack of communication with the hospital that look after me, cant get to see consultant in admission advoidence, GP just dosnt know what to do and then usually either end up being seen and told if get worse go in or admitted and discharged without getting anywhere as they wont give me amino unless bad!

    Already on max dose smyicort, so usually up nebs then steriods....

    I think the last few bad admission could of been cut if gone in sooner!

  • I hate that 'in-between' stage where I'm struggling at home, but don't think I'm ill enough to bother people.

    My plan now involves increasing Pred quite early to try and stop things getting bad. If I'm still struggling after increasing Pred, I'll see GP. My GP however usually had me admitted because there's nothing else she can do and she knows how quickly I can deteriorate if I've gone into a dip.

  • my action plan is to up my inhalers, start a course of steroids if my peak flow goes under 2500 (normally 300ish), and to go into hospital if it drops to 200, although im meant to be sensible and go by how i feel not just peak flow.i have brittle asthma and have had to learn how to manage as its makes me ill so fast that at times i dont have any warning signs, however i do have times when i think i really need to do something but wonder if i really need to go in to hospital. my gp's always just tell me to get ambulance asap as do the resp team. i know i can now ring the community matron and the other team who will come out to help keep me at home if possible but even that makes me feel like im bothering people. i suppose i do know in myself when i should have 999 but i have been wrong and felt i could wait then to be told that i was putting myself at massive risk being at home....i would say go in if in any doubt (but i dont often take my own advise lol)

  • Im fine on in a acute attack to a point..... yes stubborn but will go in its the inbetween stage.... the nurses in resp and ED/MAU know me well its just doctors if they dont know me tend to do the lets see how you go. I go splat without warning ( I mean big splat) but can be very ill for a while Drs say its my stubborn side and have good coping mechanism's.

    Its the inbetween I dotn know what to do, get frustrated if Drs arent helpful but sit at home knowing its coming. Most of the time its day of amino and Iv hydro and sorted for another month!

  • Im fine on in a acute attack to a point..... yes stubborn but will go in its the inbetween stage.... the nurses in resp and ED/MAU know me well its just doctors if they dont know me tend to do the lets see how you go. I go splat without warning ( I mean big splat) but can be very ill for a while Drs say its my stubborn side and have good coping mechanism's.

    Its the inbetween I dotn know what to do, get frustrated if Drs arent helpful but sit at home knowing its coming. Most of the time its day of amino and Iv hydro and sorted for another month!

  • Thanks for this post. Its hard to determine what to do in the in-between stages. For me my asthma nurse and consultant gave me an action plan. Which means , 10 puffs of ventolin, if that fails, then up steroids, and phone them. If this fails and peak drops under 50% go straight to hospital. As asthma is brittle/severe and goes down hill fast.

    The hospital that knows me well act very quickly and give me nebs, injection,magnesium as per requirements. Those who don't sometimes hold off until i get desperately ill and i hate that. So I act to prevent worsening scenerios now cos I don't need bad experiences.

    I need to be monitored as its very difficult to get stabilised sometimes, back to back nebs, drips etc if you fail to act. I sometimes wished i had foresight , now Gp says go straight to hospital because they have the facilities to handle asthma flares/ attacks.

    You don't want to waste anyones time but being ill is not fun either. I have made mistakes and not called the green men sooner. Basically my doctors/ nurses said in my case let them determine whether the attack is severe or not. If its milder i go home sooner if not they save my life.

    I hope you find a balance that works for you, hon.

    gill

  • going asthma nurse this om to update my current action pLan + go thru everything as unsure myself bout the inbetween stage as being brittle i am okay one minute and then if nebs etc dont work then often its green meanies needed the next !!

    if i can feel myself going downhill then i max the pred and do burst nebs, if not work 999, if they do yey! ring asthma nurse to tell her and guidance from her.. but that only ever hapened tha once so far...

    x x x

  • I am finding this post and replies very interesting because although I have been classed as a severe asthmatic for a little while now I have just recently been informed that I am brittle asthmatic as well, so to read all your experiences has been very enlightening to me, and has raised some questions that I will be able to ask my consultant the next time I see him.

  • action plan for me updated -

    two types of attack - gradual and acute

    gradual - increase pred and puffers (with noticing signs)

    acute - nebs, if nebs not work, gree meanies

    simplez, eek!!

    lol

    x x x

  • With the gradual what if after steriods and nebs it dont help? admission?

  • with the gradual, if steroids increase and nebs etc dont help, then admission yes thats the updated action plan from today i was given.

    x

  • When going down hill - I ususally ring my resp nurse and have a chat with her but a lot of the time she asks me what i want to do?! I am like i do not know hense i rang you. If i am confident with what to do i just do it but i ring for advice when unsure. It does wind me up at times when they ask you what you want to do?!

    If i am clear cut ie peak flow lower than 300 i up steriods and ring and tell resp nurse what i done

    if this does not work after 5 days i ring resp nurse again and it usually means going in for iv magnesium.

    but like at the moment we are trying to work out if i have an infection i do not like having to make the decision as i fell very vunerable because if i make the wrong decision then i would end up in hospital and in trouble for not acting sooner but how do i know if i have an infection?! isnt it the GP job to tell me? or the nurses job? I do not like being left to decide what to do! I would prefer medical people telling me what to do and making the decision! I am guessing other severes prefer this too?

    (note i do not want medical advise i am just moaning at how medical people give us too much resposibility when it comes to deciding what to do)

  • Apparently when my resp nurse is on holiday or uncontactable i should ring my consultants sectary for advice and they will ask my consultant what i should do and get back to me. This is a good service!

    I wish i could say the same for GP or other medical people i come across!

    Being a Severe Asthmatic is not fun! As when you start going down hill it is hard to get back up again!

    Plumie

  • I have written my own version based on the AUK's Asthma action plan with green, orange , darker orange and red zones. I wrote down what I have been advised vervbally for many years.

    Green - usuall stuff, well more like lots of stuff I take daily anyway. PFs etc

    Orange 1 - increase nebs, O2 if needed , Start s/c, increase steroids etc PFs

    Orange 2 - more nebs, increase s/c rate with Cons permission. O2 during day etc PFs

    Red - usually on my way in if 2 back to back nebs don't work, very SOB, high flow O2, nebs on O2 while waiting for amb, Epipen if really deteriorating fast. PF below 140 etc

    My advice is get something written down, even if you write it yourself so you have some firm guidance to give you the confidence to make a decision when you are not well.

    I do have direct admission if needed but I usually go to A&E.

    I don't usually see my GP about asthma unless I need antibiotics and for my annual presciption review because they always say speak to cons. If I do have doubts I phone my Consultant for advice, though it can be a few hrs or a day or two before he can get back so not really in an emergency situation.

    Being Brittle, I manage quite a lot at home and only go in when it becomes unmanageable when really chronic (Type 1 BA) or if I have a sudden severe attack (type 2 BA).

    I know when to go in now and don't delay. I have a home nebuliser and stick strictly to what I have been told is safe.

    Kate

  • I know what you mean Plumie. I've often done everything I know to do, and am in this not great breathing place...that goes on and on. But...I'm still limping along O.K. at home. That's often when I'll call. For a while my consultant was having me check in every two days, which I really appreciated because I was sure that's what kept me out of the hospital.

    Bee

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