Complaint Letter to Revolution Bar
11 years ago
Friday, 16 January 2009
clinic
Well had clinic yesterday and although i got off without having iv's and my weight being up i still felt unhappy. I dunno just feel like no one is listening to me. my chest is being a bumhole and playing up and i'm producing more crap from it. And my weight it's fab that it's up but i expected it to be more it's 46.6kgs. still along way off where i need to be they said they would give it another 6 weeks and i'll have ng tube fitted but can i really afford to wait? i feel stupid cos i should of tunred round and said what would you advice me to do? Ng now or wait but didn't think about it well they wanted me back in 4 weeks but can't fit me in for 6 weeks kinda feel not important sounds harsh i know but there are 2 patients who are having tx assesment me and someone else. so no offecne but you'd think we'd be higher priority as we need all the help to get where we need to be. Just feel bit down about it all. I mean when i went harefield Dr carby said he wanted me in asap and that he can't wait 6 months for another appointment as i need to go on the list as soon as and that he thinks there will be nothing to stop me going on the list. But he can't do anything till i am 50kgs and it is really getting to me now as i have tried so god dam hard i can't keep waiting anymore. by the time i have the ng and the weight to get on it will be 6 months since harefield. then gotta have all the tests and my teeth sorted it's so stressful dunno what to do anymore.
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2 comments:
Jo you should tell them that you want to start doing the NG feed as soon as possible!!! Six weeks is not acceptable when you need a transplant!! Tell them your finding putting on the weight stressful and would rather start NG now to take the pressure off you and get the weight on as quickly as you can. Phone them up and demand another appointment to start NG as soon as possible. It's your health on the line and you need to be on the list quickly before you decline anymore!!!
I hope you don't think I'm being harsh but you need to be forcefull!! If you feel you can't do it get you mum or dad to call on your behalf :)
yeah you need to be forceful, you are wanting a transplant, dont they understand you are at the end stages of cf and need weight pronto even if you didnt need a transplant this would still be the case! Time is not on your side (I know that sounds horrible and I don't want to upset you, but I think you already know it). If my weight was like that my hospital would be on me like a ton of bricks and nag me all the time! lol
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