home from hospital and feeling tired, emotional and very fed up!!

Hi

I don't really expect anyone to reply just need to have a good moan

I was due to go to the rbh last week on Wednesday but no beds and then again on Friday but again no beds (i understand that they are very busy) I was due to go for a steroid wean!

i had been a bit of colour all week and by Friday evening gave in and went to local a and e! had iv hydro, magnesium and amniophyllin and back to back nebs. been trying to get discharged all week and even asked to be transferred to the brompton if they had a bed, this didn't happen as local hospital could never get hold of anyone.

the problem is i am at the end of my tether with it all! my local hospital say that the rbh need to be involved but they dont seem to be doing much and rarely return calls, emails etc.

my local hospital are also questioning the point in a steroid wean as they don't see what is going to happen after this! the reg just said that if i do it after a couple of week i will end up back in, this fills me with little hope of getting anywhere. the reg told me to ask them for sub cut bricanyl but when i mentioned it in the past i was told i needed a steroid wean! i feel like i am being pushed from pillow to post and getting nowhere.

The other problem is that the steroid wean is going to take three weeks apparently and i just spent five days in a side room in local hospital and nearly went nuts, i know i will never manage 3 weeks away from home, no visitors!

sorry to moan and i know some people have made lots of progress at the rbh but i am getting no where fast ( have been going for two years)

i was wondering if anyone has done the steroid wean thing and how they got on, or if anyone has any advice.

i am sorry to moan but just don't know what to do!!

sarah

7 Replies

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  • Glad your home and hope you soon get the help you need.

    love Glynis xxx

  • aww pet i hope you are feeling bit better. rest up and moan away x

  • Sounds like you've had an awful time - it's really difficult when you get conflicting advice. Hope you get things sorted. Take care. Angeline xx

  • Hiya, thought I would join in with your moan, just to let you know you are not alone!

    Last year after asking for a subcut trial for my son rather than going with Cyclosporin I had a similar frustrating experience.

    J went into RBH for 3 weeks, to trial subcut. He was really well for the 3 weeks before going in and managed to improve his lung function while in there. He is usually hovering around fev1 50%, but recorded 80% on first day and peaked at 94% after the first week.

    I could see the trial was going to be a waste of time as he was so well but still had to see out the whole 3 weeks. I was in tears by the end of the 1st week, and J was frustrated and distraught by the end of the 2nd week. To top it all someone stole his ipod when he was there which resulted in him crying and causing an attack!

    As you can imagine I was not happy that the trial was a washout but the worst was still to come. It was suggested J was so well because he was away from his home environment and his consultant wanted him to go into his local for 6 weeks to prove the point! Needless to say I wasn't happy but didn't really have much choice. J managed 4 weeks there, was really distressed, getting into trouble at school and locking himself in the toilet crying when I had to leave at night. He became increasingly unwell when he was in there as they wouldn't increase his Pred when his pf started dropping as he didn't look too unwell. He had an o/p appointment at RBH after 4 weeks and he turned up with an fev1 of 35% and they agreed he didn't get better in hospital and he didn't need to spend the whole 6 weeks.

    So ... I fully understand where you are coming from. 3 weeks away from home for something that you don't think is going to be benefical is very frustrating!

  • I know what you are going through with the local and brompton.... my local is bath and cons is Birmingham... started off in Brum as used to live there and when came home Bath saw me and said I am too complex for them to manage but we keep seeing me to keep my notes up to date for admissions. They refuse to do anything as they dont want to step on brums toes!

  • Hi sarah

    want to join in ranting with you to let you know you are not alone!#

    For once my asthma seems to be happy but all the rest of my long term conditions are playing up and i also have a chest and kidney infection so i am really unwell. It is really unfair how you just build your strength back up from one asthma flare up to be knocked back down by everything else. I have so little strength that i am not moving from the sofa and had to crawl to the toilet earlier. I am so thankful on days like today that i have home care coming in because i know other wise i would not get food or drink.

    I would encourage you to keep fighting with your consultants and tell them exactly how you are feeling about the whole situation because i always find that they cannot read minds and they never know how we are really feeling unless we tell them! Tell them you feel it will be a waste of time after all you know your body better than them. It is like me at the moment i know it is touch and go and that the infection could flare up my asthma at any point so i have to keep a close eye on it esp as i on my low maintance dose, so i need to be ready to up meds should i need to. At the moment i am not tolerating food which is making it very hard to get well again.

    Please feel free to rant all you want!

    Take care

    A very ill Plumie

  • thankyou everyone for your kind replys it is nice to know that people understand my situation.

    still getting back into the swing of things post hospital but slowly but surely getting there (it seems to take longer after each admission to recover)

    sorry plumie to hear you are so poorly!! take care and rest well! xx

    thanks again

    Sarah

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