I was diagnosed with PBC about 10 years ago and have had very vague symptoms until 3 1/2 years ago when I turned yellow and retained 26kgs of fluid.
I had an MRI which showed a blockage in my Liver and they put me in for day surgery to have a look. The surgeon was shocked to find my liver full of puss, the feeling when I awoke that afternoon was amazing as I felt so much better with that all gone and was started on an antibiotic drip, well this feeling was short lived with my health deteriorating rapidly very soon after. I was gravely ill and transferred to a bigger hospital under the guidance of 2 specialists who couldn't seem to agree on the course of treatment or action plan for me. Unfortunately they should have got me to the Liver Transplant Unit sooner as I may not be writing this and all would have been well and sorted out. But, hey things happen! By the time I reached the transplant team the Professor didn't think I would survive as my bloods already showed I should not be here, but I am! I was waiting for the next available liver to arrive when my system started to recover slowly but definitely showed signs of recovery. I finally left hospital 2 and a half months after my scheduled day surgery. (a very long day indeed) I went home without a transplant.
I went home to face another 6 months of inability to get off the couch or up the stairs to bed, feeling like death every day.
I have continued to struggle even until today as I have constant debilitating pain, abdominal swelling, swollen legs, blown veins from all the initial fluid, liver spots, continual itching, hair loss, brittle nails and white spots on nails, weight gain, insomnia, exhaustion, nausea, diarrhoea, constipation, some light bleeding from the bowel, headaches, malnutrition, vagueness and many more symptoms.
I would not wish my life on anyone as I've not got quality any more, I am just trying to get through every day.
But on the bright side, I am alive.