I've been reading as many posts here as possible. My Mother-in-law is in End Stage Liver Disease. She was diagnosed about 5 1/2 years ago and had been suffering from syptoms for 2 years prior to that. She has undergone all the screenings and scans, etc. She has had the varisces procedure done twice and the parasentesis 6 times now (the last of which was yesterday).
They travelled to Aurora, CO 1 - 1/2 years ago for a consultation and was told she wasn't bad enough to even be put on the list for a donor. Now she is in too bad of shape to be considered for the transplant so we are all finding this very frustrating. Her specialists have suggested she find a local general practitioner as it is too difficult for her to travel the long distances for appointments. We have all been told there is nothing else they can do for her, except make her comfortable.
I've been trying to get copies of her bloodwork for the last five years so we will have the information and access to the progression. It is also important to have the exact diagnosis since her liver disease is hereditary, she has lost an older sister and brother to this disease.
about a month ago we were sure she was failing; extreme fatigue, hallucinations, no appetite, deep depression...
She ended up in the hospital with a host of problems besides her liver failure her kidneys had almost completely shut down, her blood sugar was dangerously high, as were her potassium levels, and a few days previous to her hospital admission she had broken out with a pimple like sore on her head - which turned out to be Staph infection!!!
Thank God she has received treatment for many of the dragons and is working on slaying them all. We are very diligently cleaning the staph area which grew to about 3"x2" (the dermatologist told her hair will not come back and she will have a scar!). Her faith is very strong as her determination to keep going. We are all very proud of her and are committed to doing whatever it takes to help her.
Now, to the biggest frustration we are finding it impossible to find somekind of timeline for each stage she has faced and will be facing. I know each case is different but it would be helpful to have some idea of what to expect. Her brother that died from the disease was diagnosed and died within about 6 months, the sister it was only a couple of years.
Thank you all for sharing your experiences, it is helpful.