Tuesday, 1 September 2009

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!!.

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