fear of being dismissed :(

i escaped from costa yet again on fri as u guys know, only i was let home way too soon, as my peak flow not 75% onf my best as BTS say it should be and was still SOB, and still got pneumonia, resolving.

whats more, since being at home, my PF dropped more, chest wheezy + crackling from the infection bringing up more green stuff (sorry!) needing more and more inh, and given myself neb as well as so desperate struggling so i know should have been in costa longer :(

but i am scared to go back to same hospital due to their treatment (including giving me the wrong antibiotics which i believe to have led me to this, well hasnt exactly helped - amoxicillin never helps me, kept telling them this, always makes me worse if anything!! need to be augmentin, yet they dismissed me)

and a few times when i have been to my local hospital they have said its anxiety and panic attack rather than asthma / chest infection when its clearly not with the sounds on my chest and dropping sats, and as soon as they read in my notes that thats been mentioned on a previous admission their attitude towards me there changes and if i return there now, they just think i am being anxious as i escaped there fri and i am back again.... whereas at the other hospital which is slightly further away, they know me much better, know when slight anxiety has WORSENED my asthma, but not that i am HAVING panic attack!!

i know my body and my condition! right now, getting worse, i need stronger antibiotics, nebs, possibly iv mag sulph unfortunately...

i know i am getting worse, going downhill, dont wanna end up in resus again as if that happens will end up in first hospital again as its closer . . .

help!!

x

21 Replies

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  • Oh Snowygirl, that all sounds so distressing. My asthma is nowhere near as bad as yours and I have never (touch wood) had to be admitted to hospital. I have, though, had problems with anxiety and panic attacks, which I think were triggered by prolonged use of flixotide and ventolin (I now have Symbicort and although my symptoms are about the same the anxiety is pretty much gone) and I can absolutely guarantee that you know the difference between asthma and panic attack. What these people don't understand is that when the asthma gets worse you'd be stupid NOT to get a bit anxious but it's the breathing problem that leads to the anxiety, not the other way round. Some of these people are so impressed by their own qualifications that they forget how to listen to their patients.

    There's so much chatter going on about choice in the NHS at the moment so if you asked the ambulance crew to take you to the hospital where you're better known if you asked them to?

    Feel better soon.

    xx

  • thanks for your reply annista.

    spoken to out of hours gp. got appt now, they gonna assess me first, gonna have nebs at home first. then go to A+E where they know me :)

    luckily i dont get side effects from my inhalers, except the obvious sally shakes from salb!! lol

    the only time i get anxious is when they dont listen to me!! and lil bit when i am at home + meds dont work, but as long as i know i am at home wiv someone + green men on their way, i feel safe, not anxious :)

    x x x

  • Snowygirl,

    Hope you feel better soon and get the help you need in the hospital you feel

    is best for you.

    Glad the out of hours doc is helping you and get the best treatment from An E

    Love glynis .xxxxxxx

  • Hi there,

    I just wanted to say I'm sorry things are going south, and I hope that you get the help and the understanding you need. I've had doctors who treated me like I was crazy, and it was awful! It is always such a relief to get someone nice who listens. I hope that happen to you.

    Bee

  • I hope you get it sorted soon. I find that I can walk up the stairs with a panic attack, not so easy if its asthma. I struggle to see why they can't see the difference. I can't deal with health people who don't listen either.

    Good luck!

  • hey guys, thanks for replies.

    see docs, PF 340 despite hrly ih and home neb.... sats okay. listened to chest, what a suprise ?! - wheeze and crackles and no entry at bottom of lungs.

    she in complete agreement i was discharged too soon, and couldnt understand y on amoxicillin either ??

    gave me more nebs, as well as more to go home with, changed me to augmentin + clarythro = what i normally respond to, and i gotta use my home nebs tonite preferably to inh, see if that helps things, if dont improve later, i need to be captured back to costa, DIFFERENT costa, told them i not going to same one for obvious reasons. she said they would prefer it as class it as a failed discharge, but she understood my reasons, and was happy to admit me at the other costa instead if i needed to go in.

    hopefully not.

    had neb at 430, then inh x 10 puff in taxi home at 630 now neb as i am writing this :S hopefull i can last bit longer now and try get some sleep dispite pain, coughing etc . . .

    thanks for your support + concerns guys :)

    x x x

  • So sorry things have panned out this way for you, but glad you're now *finally* getting the treatment you need. I really hope things start to improve for you soon. I think when you're feeling better and stronger it's probably worth a letter to the hospital that discharged you too soon as they won't learn from their mistakes if no-one speaks up. You never know, maybe they'll respect your knowledge more if you ever end up at that hospital in future.

    Take care of yourself and rest up. x

  • thanks nimueh :)

    i am already planning on writing to tha pals office of the hospital, wot hurts more bout that hospital concered, i used to work there in a diff department, so they know me!! (well the A+E staff know me as a patient and as i used to attend resus there as a staff member- i am a nurse you see) its sad :(

    wen seen the doc earlier i said i was planning on writing a letter of complaint of such effect, and she said she supported me. the nurse looking after me the day i was discharged, was in shock when i said was goin home, she didnt agree, as i was still on oxygen that morning ? among other things!! grrr....

    last year at another hosp which i will DEFO no go to again any circunstances- life/ death situation or otherwise, they were even worse ad overdosed we on iv amino and sent me into a life threatening heart rhtym where my heart went racing and i had to be given iv meds to stop me having cardiac arrest, yet hospital denied it ??? they did a list of things but that was main thing. what is wrong with nhs today- adult services ? i never treat my patients in work like that!. . . . i work with children.

    but yes, i will defo be writing to pals office bout this.

    i am resting up. had neb with doc at 430, inh x 10 in taxi home at 630 and neb at home at bout 8 ... see how i get on

    x x x

  • Hi Snowygirl,

    I am so sorry that you are still having a difficult time with your asthma and chest infection.

    The last doctor you saw seems to be very good I am so pleased she was able to help you.

    I hope you start to feel better soon, take care and make sure you get plenty of rest

  • havent ened up back in costa! but been on 2hrly nebs oernight at home, sometimes needing 2 at a time, now on hrly :S so maybe costa needed :'( DAMN U pneumonia affecting my asthma!!actually its the hospital, if it wasnt for them dischargin me too soon, and giving me wrong antibiotics - not listening to me, i wouldnt be suffering yet again . . . .

    sorry for the moan . . again!

    x x x

  • Morning, Snowygirl. Glad to hear that your out of hours GP came up with the goods and you didn't have to get kidnapped again last night. I hope you soon start to feel better.

    xx

  • thankyou annista, no not captured. was on 2hrly nebs overnight :S sometimes needed 2 at a time, this morning needed hrly for bit then back 2hrly. went to own gp for emergency appt review...

    said it dangerous for me to be on <3hrly nebs at home!! so if i cant manage less than that now, then will need to be captured to go back to anothr costa :( when he lsitened was hr post last neb and had wheeze and crackles then... but managed to hold out till just now - so lasted 2.5 hrs so okay ish :S he suggested putting pred up bit as well and going by peak flow also, which was down 340 already, hr post neb :(

    normal 550.

    so i was right, defo diacharged too soon, defo on wrong antibiotics, defo wasnt getting better, and DEFO writing a letter to pals office!! and i certainly not being axious bout the situation lol, think my PF and symptoms prvoing that all too well!!! lol

    hopfully improving now though :)

    x x x

  • Sounds awful. Snowygirl, I really feel for you. You cope so well with it all - my asthma is nowhere near as bad as yours but I find it very hard to raise a smile when it's being difficult. Take lots of care today so you can stay home.

    xx

  • cope ? i not coping at all well . . .

    sick of being back and forth to gp, costa etc... grrr!! it be nice to feel and breathe 'normal' again.

    going to asthma support group tomorrow :)

    i am determined to stay away from costa now with new plan + meds etc, but i will go in, against my btter judgement >: ( if i need to . . .

    thanks for your comfort annista :)

    x x x

  • You might be sick of it all Snowygirl, but you're still fighting back. I like the idea of an asthma support group - hope it helps.

    xx

  • true :)

    the support groups are run by british lung foundation. all over uk, they shoul have one in your area if you look on their website ?

    x x

  • Loads of 'em - Watford and Welwyn Garden City are the closest but they meet during the day while I'm at work. I guess that if I'm well enough to go to work I'm probably well enough to do without a support group :)

  • haha thats well said :)

    well i will let you know how it goes tomorrow, if am well enough to go, as gone down hill yet again - its like a mountain range of peak + troughs at the mo! and let u know if say anything interesting and useful :)

    x x

  • managin 3hrly neb now with odd inh in between :S so things looking promising :)

    no costa thankyou!!

    x

  • Ha, you've foiled 'em - well done! Take lots of care today, you don't want to slide back into the clutches of the green meanies now that you've escaped!

    xx

  • thanks annista, hoping not to go anywhere near green meanies, although when you're as brittle there's always a small chance... fingers crossed x x x x

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