Hello

Just thought i’d say a quick hello. I’ve been looking at the messages for the past week and decided i would register.
My dad has had Primary Sclerosing Cholangitis and Ulcerative Colitis for nearly 18 years now. He’s been generally very well however we all knew that the only cure for his condition would be a liver transplant and that his condition would eventually get worse. Anyway just before Christmas 05 he was put on the transplant list and we started waiting.
We had a phonecall at the end of Feb and he went in but it was cancelled at the last minute (problems with the donor). 3 weeks later we had a second phonecall and it was all go this time. He went into theatre at 7pm and we were told that we were not to expect a phonecall until the morning as it would take all night. Anyway at 10.30pm the phone rang and they said that they had found tumours on his liver and that they had to cancel the transplant. We were all devestated. He had a lot of fluid retention after the operation and his wound leaked a lot for quite a few weeks after and he therefore had a bag on. He started chemo (Gemcitabine) a few months ago and has been well apart from being very tired. His oncologist has said that they may start the cisplatin and gemcitabine in combination but this hasn’t happened yet. His legs have started to really swell up in the past few weeks and he had to go in today to get a drain put in as he has a lot of fluid collecting in his abdomen. He’s had to stay in as there was still fluid coming out after 2.5 litres being drained off.

As my mum keeps saying it’s so unfair that it happens to people that look after themselves and help other people so much (my dad is a doctor himself) but after the initial shock i’ve been able to remain quite positive and optimistic. We were all very hopeful that he may still be able to have a liver transplant after the chemo but at the moment he’s been told it’s not an option.

It’s great to read about everyones experiences on here – makes you realise that there are lots of people around the world going through exactly the same thing.