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Re: How long have we got?

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Hi Barb, My son was asymptomatic at diagnosis, and still is for the most part. he is very fatigued at times though. his diagnosis was by chance.... they were monitoring his blood work as he was given pretty heavy duty drugs to try and control the constant bleeding from UC. originally they thought that the abnormal LFT's were a result of the meds. The meds were ceased but the LFT's just got worse. Then came the MRCP and Biopsy, the rest is history. No doubt if he had not had that blood work done we would still be unaware of the PSC. For the record I agree with your statement, PSC - time to death or transplant - undetermined. turned 17 today!! Yay. We live each day as it comes, never forget to tell each other how much we love them. and are grateful for the time we have. He is a beautiful person and has a very positive attitude, he is attacking life with gusto!!!! We are aware however that his PSC is progressing due to changes in his annual ultrasound. He has not had a MRCP for two years and has one due this June.... that will be a nervous day for us all. Penny Mum of Tim, UC11/04, PSC 2/05 Send instant messages to your online friends http://au.messenger.yahoo.com

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