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
Monday 28 September 2009
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!!.
ayesha
xxx
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
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