This thread is for those of evil intent; you know, those wanting contact with other open-minded folks who like to explore issues together. First topic, transplants for those we love and possibly someday for ourselves. For transplant info, there's lots to keep you busy at http://www.unos.org/ . Not an easy read, any of it, but if you keep digging through the bureauspeak, some of it is informative and understandable. From a cursory look, it seems the policy on segmented livers has lagged behind some of the rest. Also, "official" public comment before the policies were initially adopted was closed some time back. Still, an agency like this has to be continually revising and re-evaluating its policies.

Again, just from a quick look, it seems a person can be put on the list by more than one member organization, I need to read more, but I wonder if that's to get around the geographical inequities that seem to be built into the policy. (?)

i can get my liver transplant or segment anytime i want it...all i have to do is pay the 200k-250k up front..not for the organ..that would be illegal..but for the procurement and transplant teams..plus the peri-ops..

don't need no stinking list..just money!

That sucks big time, and why am I not surprised that it is that way. It wasn't that long ago that some pretty scary sci-fi was about such situations, and we figured it would be after our lifetimes.

my best shot..and mind you i haven't accepted that i can't turn the worm around
naturally....

is researchers...my doctors are researchers and teachers...of course there are residents and attending physicians..but i think they are there for comic relief.

being a poor man..with no redeeming value to society..my best chance is an experimental program. my father says that with my constitution they ought to give me a pig's liver...i'm willing..and with one that size i could enjoy guinness again.

Please tell me you've applied to NIH, then. If they accept you, it's all paid for -- including transportation. But of course, you knew that.
Sounds like you have a support system, at least, and don't have to do it all yourself. It's not as good as having a support system and money too; but I have a feeling (to paraphrase with considerable license) that a support system will get you through an illness with no money, better than money will get you through illness without a support system. I wouldn't know first hand, of course, but I'd be willing to bet on it.

It doesn't matter so much, I don't think, whether you're convinced you can turn the worm, or not. What is important is that you face it head on, and do as much for yourself as is possible for you to do. (IOW, if it takes drinking decoction of milk thistle until you're blue in the face, why then, by all means turn blue.) I can only speak from my own experience; but then, since it's still impossible for me to be alive at all, I figure maybe I might have adopted the right attitude somewhere along the way. (And speaking of milk thistle, I also found that with herbal medicine what you need tastes good, while what you don't need tends to taste rather foul.) I don't think I've ever said, "I'm going to beat this," though. It's been more along the lines of, "What can I do and/or avoid doing that will support the healing process?"
FWIW.

Wise words, Muffy.. a friend of mine had a serious illness which was caused by her own actions, previously. She said the words, from a friend's grandmother, turned her life around, they were..."First, give yourself permission, to be healthy"

you sound very much like the doctors...it's more like what can be done to buy time, but the disease process will not be reversed.

now, since you spoke of the milk thistle and such..i'll address it. no herb or chemo will aid me..my problem is purely mechanical now.
it't too late for treatment. the portal vein has closed due to bridging and scar tissue..
imagine a garden hose with your thumb over the end..remember the pressure that would build up until it had to come bursting out finding the path of least resistance. that's me..i still feel if i took a skewer i could gouge a hole out...docs say they will be doing that as a last resort when i'm already on the table...to buy some time.

treatment protects the healthy cells from the virus...it doesn't change the vein closing. so here i am at home with my wife's skewer and a bottle of rubbing alcohol...my next problem is i need something to help my blood clot since the liver won't utilize vit k to help...now the plan is to eat foods rich in vit k for three days before my self skewering...and somewhere in my insane mind, i still think this plan could work.

that's enough focus on this for me at the moment and we haven't even dealt with the esophageal varices, sepsis in fluids, and congestive heart failure the condition causes.

The Milk thistle thing was only meant as an example (although I can always hope, can't I?). You sound like you're in the right place, head-wise, to me: Not much else you can do really, besides gathering as much information as possible, then acting on that as wisely as you're able.
Once again, I wish you all the good luck in the world, Todd. I know pain and the whole poked-and-prodded scene all too well. Our medical problems may be light years apart, but there's more than enough common ground, all the same.
Hey, Todd: remember what it was like to have a sense of privacy and dignity? You know -- <u>before</u> everybody and their uncle had seen you naked and had had their hands inside you?

lol, muffy!!! i know i'm getting off topic, but i gotta share this...

i go to hospital,,first doctor checks prostate...leaves.

second doctor wants to check prostate,,i say first did it...he says,,he didn't write it down..so he sticks his hand up my butt too...then leaves.

the third doctor and boss comes in finally, and wants to check my prostate..i tell him the other two did...he says, i don't trust them, and sticks his hand up my
butt!!

i decry, what are you people?? rejects from the catholic church???

i then limped home.

Presenting orifices for inspection is no fun, but the same one, three times in one day! That is abuse!<img src="http://www.arlo.net/ubb/smilies/evil.gif" width=15 height=15> Sue them and get the money for the quicker liver! (Wish you could.)

I see you know exactly what I mean ... <img src="http://www.arlo.net/ubb/smilies/laugh.gif" width=15 height=15>