A general moan

Been home for 2 weeks after usual iv, O2 etc. A few years ago 14 days of treatment would be enough but recently am finding that things dont work quite as fast or as well as they used to. Dont know if this is to be expected but I feel my consultant is more or less saying this is as good as it gets but I dont think I should accept it I should be aiming to get back to my best. Any thoughts?

[KateMoss]

Hello Almo,

sorry your having a rough time at the mo.

I found a few years ago that I was in for longer and longer times - up to 3 plus weeks sometimes! Some of this was down to ever increaseing doses of ventolin or Bricanyl s/c which meant I needed higher doses IV for longer periods.

Peraps a review of your emergency IV meds may be needed. I have IV Magnesium and then either IV Ventolin and or Aminophyllin which works well for me. I used to be just gallons of IV Ventolin.

Hope this helps a bit.

Kate

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hi almo sory youre stil struggling so much. reading your post was lik e reading how i am at mo. i was disch mon after 10days and short stay icu but feel absolutely dia and worst ever on discharge but feel just told this is as goo d as get s so to et on with it and hopeflly pick up at home, sure there was a bed shortage!!!. not that ever wanrt be in loner thanhave to but nor can cope ike this long at home. fed up of goal posts moving and being expected to accept more and more sounds like you know what mean there.

pred up to 50mg again at mo and nebs to max just no where else to go. wish would increase my sub cut to try stabilise things bit or at least attempt get pred down but doesn seem an option. sorry things rough for you too. dont know what t advise but youre not alone.

take care. hope soon start picking up

sarah

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Thanks for replying am glad its not just me!!

Already av iv magnesium iv amminophylline iv ventolin and hydrocortisone when in but sometimes when you feel better in hospital it gives a false picture of how you really are because am only allowed to bathroom and back not really the same as looking after a 5yr old on my own at home (a lie in what is that i cant remember). Tried nebulised magnesium to have at home but had allergig reaction and ended up goin in but bizzarely ok with iv mag, dont ask!!!!

Am probabbly at 50-60% at mo which is not good but what can you do when just come out i hate going to clinic saying i feel rough i feel like a broken record. Before i had my daughter i would just suffer in silence but when your child is crying because you cant take her to school, play with her etc its heartbreaking and she deserves better.

Hope you are all well. Take care

Almo