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

  • 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.

  • 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

  • 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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