British Liver Trust

Trying (and failing) to cut a long story short

In late March this year my friends noticed my eyes were yellow so I went to the GP and it all got serious from there really. Had urgent bloods as they were worried I had hepatitis but as more tests were done no results were showing a cause.

My skin then started to go yellow too and I had a planned investigation day to try and find a cause. Then came about 9 weeks of confusion and waiting which was possibly the worst part of this whole thing, knowing that you're getting worse but not having a reason why isn't exactly easy to deal with. After more tests - a liver biopsy, MRI scan, ultrasounds, x-rays, special eye tests, endoscopy and fibre scans they started to get a better idea of what was wrong but it was more a case of ruling things out than finding a cause.

In between all of this I was hospitalised twice; once just overnight as the liver disease affected my blood clotting levels and then again for 16 days as everything just went a bit wrong which was timed exactly with all my final A level exams which was annoying to say the least. I'm stable now but on a hefty amount of meds and weekly blood tests/reviews.

Now im pretty sure I have a genetic disease called Progressive Familial Intrahepatic Cholestasis.. (PFIC) just waiting for confirmation but I need a liver transplant as whatever I have has caused a lot of scarring to my liver and the development of varices.

That's pretty much everything in a nutshell - if anyone has any tips on how to cope with all this it'd be great because as much as I tell friends I'm fine its hard to explain to them when they've never experienced anything similar and I sometimes cant help but feel like a burden...

4 Replies
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Hi Becksmay, sorry to hear your news. I too have had a transplant 11 weeks ago and if you look up my posts you can read my story which started with hepatitis A.

Look forward to hearing from you.

Dan68

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Hi, sounds like you've been through a lot, glad to see you're feeling okay post-op though its comforting to know that people get through it. Thanks for your comment.

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Hi becksmay just read your post I am sorry to hear about your condition I was diagnosed with a genetic disorder when I was 13 called carolis syndrome this also caused varices anyway this led to me been put on the transplant list when I was 13 received a donor when I was 14 I now lead a normal life had my transplant 21 years now hope my story can help re assure you a little at this time and wish you good luck for the future

Reply

Thanks, its nice to hear from people that have actually been through this sort of thing, as i'm sure you can understand its a strange and lonely thing to have to deal with sometimes. Its things like hearing you're now leading a normal life that make it easier to deal with so thanks for your comment

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