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I've almost died three times since my initial 1/15/09 post. Details are boring, but these episodes indicate advancing cirrhosis and I'm now on the transplant list at OHSU here in Portland, OR.
Still, I feel pretty decent physically, although I suppose I look like shit personified. In fact, I had to renew my drivers license the other day and the photo looked as if I'd been recently exhumed after at least six months in the grave. Really shocking deterioration that, of course, I don't see in the mirror.
Anyway, I'm wondering if some of the more debilitating and infuriating symptoms -- the kind that rot your brain and eat your memory -- are shared by all those with advancing cirrhosis, or if it's just a great big menu and, absent choice, you get a subset of that menu as your personal curse.
I went quite some time without taking that vile laxative -- lactulose -- which pulls excess ammonia gas out of the blood stream, the surplus a failing liver can no longer handle, and um... sort of like... well, dumps it down the sewer, for lack of a better term.
I was able to lose the laxative by replacing it with a re-purposed antibiotic called Rifaximin (one of several spellings used for the same drug), which seemed to restore higher brain functions almost immediately -- in just a couple of days, anyway.
But my concentration level still sucks. I used to read three or more books a week -- at least two of them fairly serious non-fictions, usually political or historical -- and now I literally can't get through a 10-page short story. I can't watch a full length movie on DVD without either falling asleep or stopping the movie several times to go stir-crazy and finally settle back down.
My writing now officially sucks, which is a little career-threatening for a writer. I've played guitar for the past 40-some years -- except the last three, when I haven't wanted to bother. Which now means my playing and writing both suck, and those are the two skills I have that the world seems willing to pay me to do.
So no work, no income = no house, no car, no credit. Now, having exhausted all forms of my savings, we're living in a rental off my wife's meager income. That and the extreme kindness of friends who have volunteered to at least pay the monthly BC/BC premiums because, absent medical insurance, there's no possibility of staying on the transplant program.
Another of those great examples that prove the old adage: Only in the US is lack of medical insurance a capital crime.
So I'm wondering about my initial posting seven months back: Is anyone aware of any progress anywhere in the world that may result in any improvements in the prospects for a successful transplant or alternative treatment? Stem cell research with an eight-year head start over this bible-thumping jerkwater country?
(And may the great forces of atheism and agnosticism come as avenging angels in the night and smite the goddamn Bushies for their stupidity, ignorance and pathological lack of concern for those without the money to self-insure and travel to the corners of the earth on "medical tourism" junkets.)
Anyway, just curious. The docs I'm seeing now seem very much on top of the latest research into transplantation, but I'm wondering if there are alternatives out there -- in clinical trial or still on white boards -- that will revolutionize the process of treating and stopping further degradation of liver functions?
Thanks for reading this screed and for your thoughts and insights. This stuff really helps get me through the darker of days.
Best to all,
sf
(The keyboard commando formerly known as Warren Pease now writing as Steven Franklin cuz that's kinda like 2/3 of my real name, eh? Close enough for gummint work.)
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