Re: What About This Info-Two?


"Paul" <dontspamme@xxxxxxxxxxxxxxxxxxxxxxxxx> wrote in message
news:qtvav2tshmhj56j4kdb46of0n8698qn777@xxxxxxxxxx
On Sun, 11 Mar 2007 18:03:24 -0700, "Waterspider" <nospam@xxxxxxx>, in
message ID <12v99n7pqbnipb0@xxxxxxxxxxxxxxxxxx>, in the newsgroup
sci.med.diseases.hepatitis wrote:

In the first couple of months after my diagnosis, I spent way too much
money
on milkthistle, vitamin combos, enzymes, herbal teas and some really bad
books with no science behind them, and way too much time meditating on
making my body heal. But, luckily I'm a geek, a researcher by trade, so I
soon learned that there was no other option than the Big Guns. I had
cirrhosis and my symptoms were preventing me from functioning anywhere
near
like a normal human being. I was scared shitless because I knew the
treatment was horrible, and I knew it was the only chance I had at not
being
dead in 3-5 years (doctor's prognosis if I kept fucking around with the
alternative crap). The only way I could gather the courage to undertake it
was to remind myself that, if it turned out to be that bad, if I couldn't
handle it, then I would simply not bother taking any more pills, not
bother
with the next shot. I really had nothing to lose.

Yeah. I bought a few weird things and tried to read myself better too
WS. I was in the unfortunate position of having seen someone die on
tx - probably one of those rare people whose immune system attacked
their liver. Unfortunate I may have been but not as unfortunate as he
- especially as his liver was pretty healthy for a hepper until his
immune system went into overdrive on it.
I suppose I had better reasons than most for looking for an
alternative.
I got lucky.
My research brought me here.
At stage 2 grade 3, I may well have still been a decade away from
cirrhosis and perhaps 20 years from liver failure. However, I doubt
the last few years would have had any quality to them.
Since my (succesful) tx in '04, I have witnessed another friend die -
more directly due to hep-c this time. We treated at the same time.
Mine worked. His didn't.
So that's two deaths I've witnessed in recent years. The first one I
was there when the ventilator was switched off. The second one died
half an hour after I left the hospital. I would like to have been
there at the moment of his death but there was no way of knowing if he
had another day or two left in him. I don't feel right about not
sticking around but I don't have a crystal ball.
The yellowing, the bloating and the mental confusion as the toxins
start to affect the brain. Both good people who I shared many a laugh
with.
You know what I would like to do to these rip off snake oil selling
bastards don't you? I'd like to cut their fucking livers out and give
them to someone who needs them.
Snake oil salespeople are as close to murderers as you can get. They
can be so convincing with their slimey lies and can cause vulnerable
people to delay essential, possibly life saving treatment.

You know, I spent quite a few years with hep-c ruling a large part of
my life - either mine or other peoples. I'm wondering if the time has
come to move on as the whole thing has been pretty distressing at
times. I feel like I'm stuck in a time warp mourning friends whose
lives have gone and not yet fully able to enjoy my own life.

Feel like I'm at a crossroads (I think you call them 4 way stops over
there) and unsure which road to head down.

Paul, we've shared some similar experiences. I know what it's like to do the
hep c deathwatch at the hospital bedside. I know what it's like to lose
friends to liver failure. Sometimes it makes me feel lucky (because I'm
still here, I'm healthy) and sometimes it breaks my heart. Like you, that
hep c connection is a strong part of my life and I'm unable or unwilling to
walk away from it. I am not a religious person, which I think you already
know, but I seem compelled to spend time doing what I can to help anyone
newly diagnosed, coping with the disease, undergoing treatment, perhaps
trying to carry on after failed treatment. This all goes back to when I was
newly diagnosed, a basket-case and a physical wreck, and a couple of good
folks, strangers, came out of the woodwork to offer support, advice and help
in all kinds of ways. Some were in my community, some were friends of
friends in other towns, some were on these newsgroups. It still blows me
away that they helped me so much, and I think I'll always be here for anyone
who wants to listen to what I have to say. Payback. Goes around, comes
around. I do enjoy life again, being healthy and without the anxiety of
simply having the disease, but I feel good about being able to give
something back. Still, it sucks when someone dies, when someone fails
treatment, when someone is so thick-headed and scared that they won't even
try treatment. But at least I know that I'm doing something, maybe not much,
but at least I'm not walking away from it all. In other words, if we're as
alike as I suspect, you're stuck! Might as well resign yourself to the fact
that you're a person willing to share whatever wisdom gained throughout this
long strange trip. Whaddya got to lose?


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