Wednesday, 19 August 2009

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

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