I intended to write a series about my journey through the liver transplant process but gave up after bad timing resulted in my first 2 posts not going through. Short story is: i've lost 50 pounds, have had my belly tapped of infected fluids several times, feel pretty good most days, was at the main hospital this week for multiple tests including 18 blood samples and have apparently plateaued for now.
My MELD score (Model For End-Stage Liver Disease) is sitting and staying at a 14 (with a 5 month mortality rate of 6%) and thus my priority for transplantation is very low but I am advised I will get much worse very quickly at some unpredictable point.
The docs were impressed by my adherence to or surpassing the recommended dietary, exercise and medication regime. However, the head doc but gave me ridiculous amounts of shit for putting one sip of wine in my mouth, chewing it and spitting it out. He also pisses me off by framing everything I say as "my contention", instead of stated fact, so I began responding in kind to things he said but then decided just to sit there and shut up. ugh
There are also real concerns about my lack of a support network. I do not have a SO or kids, my siblings have no desire to disrupt their routines and I am not sure if I really have any real friends; just acquaintances at best. I offered to hire someone to live-in if necessary but they understandably don't consider that sufficient support. Their recommendation is that I impress upon my family/friends the need for support but they don't seem to understand that that just aint going to happen. I am good at being direct and have made it clear to people that I need help but no one has stepped up so I don't think there is much more that I can do in that regard.