Its fair to say the appointment could have gone better.
There is evidence from the fibro scan and the mri of extensive scarring and my blood tests show significant deterioration of the livers function.
My bilirubin is 112, however, he felt I looked better than I should! He told me PBC patients usually go more jaundiced than other types of liver disease and I should also expect swelling of the stomach and ankles. He felt that I should think weeks possibly months before transplant is critical for survival.
He confirmed that the night sweats and increasing nausea and vomiting are all a result of the deterioration.
He offered some words of reassurance that currently most people in need of a liver transplant were provided with one. I am a positive person but it doesn’t take away the fact that some don’t. If organ donation was opt out rather than opt in then so many more lives would be saved.
I have some difficult things to consider now, so I am making myself a tick list of things to do.
1) think seriously about my brothers offer of being my living donor…that’s going to have to go on the bottom of the list, i just can’t bear the thought.
2) ensure i have written to loved ones, wrapped gifts for my daughters future wedding, (I’m assuming she will marry but at 12, boys are still very much disliked and long may that remain!)
3) chose suitable gifts for my little boys for when they reach adulthood.
4) take up the consultants offer of introducing the children to him and to look round the hospital to prepare them
5) spend some time alone with my husband. He is struggling with all this.
6) meet with friends and family for some fun evenings.
7) train, go running, complete a race.
Well that should keep me busy for the time being.
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