Unmanageable asthma

Hi everyone!

Does anyone been in such situation? I feel like as if everyone is making a joke from my life! I had asthma for 15 years now but it was not this bad. Have been in ITU, once 15x in hospital 6 x infections steroids so much its impossible to count in this year. Uni is about to kick me out (was the rep in 1 st year!) and I only just saw a consultant few days ago who sent me to do a lung function test which is end of august ! After which I will see the consultant again!

Problem is I am like dying these days, cannot go out of home as too much wheezy. In letters the docs will write "" her next attack will be fatal"" but when it comes to doing something they ignore me.

Just feel like want to give up. I was supposed to see cons 1 year ago but the gp keeps hesitating. I am on max meds as to wha the docs say. But waiting 3 months for a breathing test is ridiculous ? Isnt?

To make things even worse, the gp made a mistake when I requested for salbutamol. They gave me my entire prescription! Instead of salbutamol only! Now I m not allowed any more prescriptions before I see the gp after 6 weeks!! Meaning only the salbutamol that I have at home when I use 2/3 cans a week! I am coming down from 2 a day but still I literally live on salbutamol ! Atm . I do not have nebs at home as I have to see a specialist for it is what the doc says but the specialist did nothing other than send me for some test after 3 months! Or 12 weeks! So much wish to go out but just having a shover daily and getting up to eat something is difficult! I am only 19 so this is not what I should be doing???????? but even peak flow is rubbish when I should have 500 I get 300 after salbutamol so things are going bad. The docs were aiming for 360 a few months ago but I guess its down the drains that. Not happening.

Is there anyone else with such problems? Btw I am known to like 6-7 hospitals as I live in London and every time the ambulance takes me to a new hospital for even more annoyment.

Thanks in advance

3 Replies

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  • FIrstly, your GP should be able to sort you getting more salbutamol than that. I've never heard of salbutamol being limited (especially due to a prescribing error). It should be on your 'as needed' medications' which means you should be able to get it as often as you need. You should ring your practice up and discuss this issue with them.

    Secondly, i'm surprised that at your first admission to your 'local' (whichever hospital is closest to your home) that you werent refered to their asthma clinic - that is standard practice, even for first admissions, but certainly after the second or third occasion I see no reason you weren't put down to see a consultant. If you are admitted to your local again, you might want to check what is going on with this when you're discharged, they also may be able to get you an urgent appointment to see your consultant if that is needed.

    Thirdly, unless there is a huge difference in distance you may be able to request where the ambulance takes you. I dont know how far apart all these hospitals are - but I know that if i am borderline between two hospitals they will take me *slightly* further to the hospital I want to go to (meaning that your care is more consistent) and that might be worth doing - if you exaplain it is your 'usual' or where your cons is or whatever they will try to accomodate you if they can.

    Things with hospitals do take time. If your consultant felt there was an urgent need for your treatment to be increased he would have requested an urgent breathing test. 3mnths is quite a wait, but then in a big hospital these things can take much longer than is ideal. Hopefully it wont be too long after your test that you see your cons. Dont forget that GP can write to cons to ask for advice in between appts if neccessary.

    What treatments are you currently on? There is a very limited amount that GPs can prescribe, resp cons have a much wider range of treatments and therapies to try, so don't give up hope too much, your consultant should be able to get a much clearer picture of what is going on and hopefully sort you out!

  • Well to be honest I am known to 6 or 7 hospitals but none of them took a notice. Usual practice over the East of London anywhere they will save my life give some steroids extra salbutamol and send me home when I look somewhat like breathing ok. Have a cousin whos a chest doc so I got her to pull my appointments forward a bit?. So its the end of june now ? but breathing test cannot be pulled its fully booked till september!!!

    I got prescribed 3 puffs 2x a day seretide 250

    And montelukast

    And uniphyllin

    And salbutamol inhaler

    And very frequent steroid tablets

    And sometimes antihistamines usually I get fexofenadine 180

    And cocodeine 15/500 as needed for chest pains

    Thats it but respiratory care here is really bad ?.

    Anyway thanks for your reply.

  • you seem to be having the same sort of problems as myself, spent 32 days in hospital this year and was only diagnosed with sever brittle asthma after I was given a bronchoscopy. get yourself a mobility scooter as I have it has been a god send but need to get a portable nebs I use a Omron micro air.

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