Thursday, 16 July 2009

whats been going on

Well the past 4 weeks have been a bit eventful. firstly I was admitted to hospital wasnt to bad but my oxygen requirement was bit up so i thout i'd go and get checked out this was on a wednesday, thursday I was a little worse but not too bad then friday morning it all went a bit wrong and I was struggling a bit so taken to ITU and it was adults ITU first adult ward I have been on I hated. Really it was awful. Thankfully I didn't need to be intubated. I went back to regular ward the next day after lots of tears etc. since then I've been slowly improving and am now on homeleave untill I get transferred to great ormond street. Right about that now, I asked about transplant but the team here just said no beacuse of the rareness of my underlying condtion and its known whether it will flare and what the extra risks are like with it. So I'm going to GOS to be seen by TX team there and the rheumatology/vasculitis people and hopefully they can asses me as they no more about transplant in vasculitis so if they say yes then newcastle will reasses me hopefully but im not getting my hopes up too much it will be a long and tedious road not to mention the wait once I'm on the list. So im just waiting for a Bed in GOS. Oh and I'm going to watch Harry Potter tomorrow. still on 10L of oxygen but hoping to get this down takes a while after I've been a bit ill.
xxx I'll Update soon.

Wednesday, 15 July 2009

hi let me introduce myself...

hiya, for those of you who dont know me. my names ayesha and I'm 16 well at the time of writing I am.
Just over a year ago I was diagnosed with a rare lung disease caused by an autoimmune disorder wegener's granulomatosis. Hows that for a mouthful lol. It means my immune system gets confused attacking my lungs and leaving them damaged
Well this disease has left me on oxygen 24/7 and needing a wheelchair for long distances. I also use bipap a type of non-invasive ventialtor at night. I've probably gotten so ill because my condition was mis-diagnosed for approx. three years as asthma and psychologial problems and all sorts of other silly things for . Most the people reading this blog probably already know all about me but this is a brief backgroud of the of me if you don't know me. anyone fell free to e-mail me or add me on msn at