been a long time

Hi all,
been a long time since I've blogged, well things where going pretty good I was out of hospital and stable managed to get to the Jonas brothers concert and meet them!! Also just spending time with the family and the usual stuff you learn to appreciate so much! I also won a bravehearts award!!
however since last week things took a down turn, and I ended up needing to go to A+E my normla ward I have open acces to was full so they informed A+E at the local hosiptal I was on my way and to have resus ready. I went in was seen staright away and settled overnight on my Bipap with 15l of oxygen I was managing on that untill midnight the next night where my O2 sats just didn't want to behave. So ITU it was where i went and stayed for a few days to be kept on eye on and was put on more poweful bipap machine called vision. before I went to ITU earlier that day I saw my consultant who was concerned and said he would get my transplant assesment sorted asap but freeman hospital had no beds so It was just a case of waiting for a bed. I am out of ITU know and back on the ward still not my regular but it is better than ITU I am slowly improving and having short periods off my bipap. my 3 day transplant assesment is all booked for monday hopefully there will be a bed. The transplant consultant came to see me briefly and said he would like to have good proper chat about transplant straight after the new year with me and my mum and consultant in clinic. I am hoping that after my asssesmnt I should be able to go home and atleast have christmas at home even if it means i am still using my biapa for most fo the day, It is something I feel I can ween at home.
Christmas shopping and buying presents for my sister has been put on hold, But i would like to thank postpals very much as my sisters and myself have recieved lots of lovely cards and gifts. It lovley of postpals to count siblings as they feel left out alot and obliged to to act grown up and sensible but after all they are just children.
well that is all for now hopefully I will update again soon!
Ayesha xx
P.S I have also made some very special friends recently, You know who you are xxxxxx

Also a great congrats to rachy for making onto the transplant list!!
The best present for some one at christmas would be for the phone to ring saying a match has been found! why not let something postive come out of death and pass your life onto some one else. give the gift of life and sign the organ donation register.

shortest hospital stay ever

well all my sister have had bug and i think I got it but beacuse of me being on chemo and having a low immune system means if i have temperature it can turn nasty very quick. so I was vomiting non stop all since i woke up on friday morning and felt terrible. Mum rang up the GP as i dint want to go to hospital he came home first time i've actually seen my GP its usually hospital!! anyway my temperature was 39.4 when he came so he said was best go into hospital espically as i was vomiting so much. so i went in wasn't ablt to keep any Paracetmol down so had some Iv was tested for swine flu but it unlikley i have it still wiating results started on tamiflu had chest xray and started on sum Iv antibiotics as the doctor said lokked like I had a bad infection. the nest morning i was fine tempertaure had settled kept some water and my tablets down the resoiratory consultant came who i know well and he said my xray looked fine for me better than it lokked when ive been sick with my chest the other doctor must not have know my history. so i cam home that afternoon I was in for 24 hours only hehe. still felling a bit run down but apart from that I'm fine.
oh and I passed my theory test on thursday!!!

Clinic

well today was my 1st clinic appointment after going to GOS my lung function was the same as the usual 15-20% when im well. we talked about me moving into adult care and what the transplant doc her at freeman, newcastke had said my consultant had breifly bumped into him in the corridoor and he said he had recieved the reports, but he didnt think he had read through them thoroughly one of his main concerns was my biospy from 2008 suggested aspiration which has been ruled out but a common cause of rejection post transplant is aspiration especially when your under sedation and this will be a huge risk factor if i do aspirate or silently aspirate due to reflux. so he wanted an Ph impendance test to make sure I not getiing bad reflux and aspirating. But my consultant said he write to him for his formal view and a list of anything else he wanted doing and wether he wanted to see me yet.
so things are moving slowly forward!!
xxx

much needed update

well since ive been back home from GOS hospital I havent done much I've had a few driving lessons which are going well and have my theory booked. Ok now back to what the outcome of GOS was well I saw the transplant team the next morning the day I was due to go home and they said it looked like I did have wegener's granulomatosis and that they won't transplant me if I have WG becasue noone has ever been transplanted with WG before. they have said I'm no old enough to be seen by a adult centre so i can ask somewhere else for another opnion.
Just as i was about to leave with the ambulance crew when the vasculitis(rheumatology) speicalist rang the ward and asked if we could wait 20 minuntes but we were already running late. So he took my mum mobile number and passed his e-mail address on to me.
About halfway home 2 1/2 hours into the journey he rang. He explained all tests and clinical evidence showed that my disease is actaully inactive he believes that its is lung damage causing the problem that a transplant will only fix. he sed he had emialed the Uk adult vasculitis specialist and he also thinks transplant would be good idea and hopefully be succesfull he is bassed in addenbrookes in cambridge so all my details will be sent there and I will hopefully be seen by them so they can see me and build a case to present to the transplant team and hopefully they may agree. I will be the first perosn in the world with WG to have a lung transplant if I have one!! I think I'll get on the list eventually but it will be a long road!!.
ayesha
xxx

In Great Ormond Street...

well as the title suggests I'm in GOS hospital I arrived on Monday at around 4pm after a long 6 hour drive. London is absolutely boiling compared to Newcastle. Anyway I arrived got to the ward nurse came in said hi and pretty soon the doctors the came from the respiratory/lung transplant team listened to my recent history and said the consultant would be around most probably in the morning. however about 10 minutes later he walked in. He talked to saying they weren't actually going to do a full tranplant assesment but a general one they want to make sure i actually have Wegeners granulomatosis and make sure nothing has been overlooked as WG doesnt usally prsent itself as it has in me. He said the main thing was to see the rhematology consultant. I spent the rest fo the day recovering from the long journey.

So the next day at 10am the rheumotology doctor came he was really nice and said he nice finally getting to meet me after hearing so much about me. He examined me he explained it most likley i did have WG maybe some kind of mutation but that was the closest label I will get. he asked me sum specifc question about the past month and year to test my vasculitis activity score which i scored 0/63 on which mean my diesease is not active at all and it damage that is causing the problem so he totyally agrred with us on the fact my WG isnt the problem it the damage its left behind he felt ive had all the approriate treatment for the WG and what I'm on now id helping my WG and I'll be on similar treatment post transplant as what I'm on now are also anti rejection drugs so hopefully the WG will remain inactive after a TX. He wanted lots blood tests and stuff doing to make sure the WG was definalty undercontrol and there are sum specific tests. I had a lung function exercise tests. and I was absloutly shattered after so went to sleep but went into the surrounding are for a bit b4 the tests had some lunch so did get out a bit.

Today I began my day with lots of bloods taken then had a heart echo. None of the doctors came but of the junior ones told us they all were having a meeting at 4.15 to dicus my biospy histology my xrays scans and all other results that were in. I was expecting someone to come and tell me the outcome but know one has. Im meant to be leaving tomorrow at 10 am to arrive back home intime for the ambulance crew to get back b4 their shift ends . but ive been told I'll be having blood in the morning and I obviously need to see the doctors and now what was dicussed at this meeting so I hope i am still able to go home on time. we will see tomorrow.xx
more waiting to come it looks like.
ayesha xxx

well i just really be packing as im off to got to great ormond street in the morning until thursday to see the rheumatology team there and to have a transplant assesment. really nervous about the outcome. will update bout what happens whilst im there if i have time or when i get home!
ayesha
xx

hiya

hey,
well Its my aunts wedding soon so been busy with that as my cousins are staying at my house. I went to wtach harry potter and thought it was ok. oh and I also on sunday went to watch g-force 3D. I have some news. I have date I'll have a bed will be available. 17th of august so not long.
xxx

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.

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 hauntedspirits@hotmail.com