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...