Wow Songbird, So sorry to hear your news. I was wondering how you were doing.
New things are on the horizon and your doc is right, if your liver is in fairly
good shape, you probably have a good chance of saving your liver much later in
the game.

Diet is important. Be sure to get your sodium levels checked often now, low
sodium is a slow and painful illness and is leathal.

I hope they find something for you soon, and you are in my good thoughts!

Kim

I am so sorry Songbird. What a horrible experience. Sometimes hospitals make
you worse that better. I pray something new comes along fast!!!
hc

Wow, that infergen really sounds rough!  I'm really sorry this round
didn't work out for you as well.  But you gave it a try.  At least
your liver is ok and something better will come along soon. Protease
inhibitors for HCV are coming in a few years from Schering-Plough,
Vertex Pharmaceuticals , ViroPharma  and Boehringer Ingelheim. Idenix
Pharmaceuticals  is developing a nucleoside analogue to work against
HCV. Rigel Pharmaceuticals is also working on an oral HCV drug.

I'm really sorry to hear about what you've gone through, Songbird.  I know
from my own experience how horrible the Infergen can be, but I hoped someone
would make it all the way through.  Infergen is 200% worse than any of the
other treatments--I have NEVER been so sick, or so completely out of it.
Maybe you and I will both be cured by the next miracle that comes down the
pike.  :-)  Now, try to rest and get well.  It'll take you a while to feel
normal again.

I'm very saddened to hear that.  Please keep us informed of any
changes.

W.

Put in hospital, no more infergen allowed  

Group: alt.support.hepatitis-c Date: Tue, Aug 24, 2004, 5:04pm (CDT-2)
From: lissawis@yahoo.com (lissawis)
The first two weeks I felt sick as a dog with the infergen. Kevin was
concerned
but told me I could call him instead of coming in. The next three weeks
were very strange. I couldn't remember to take infergen, I kept drinking
three liters of water every day, but ate nothing, which might have
killed me! My mind went blank mostly. I stopped leaving the house, no
meetings, no nothing. Finally, after around three weeks of not thinking,
I finally got diarrhea, grabbed two codeine pills to stop it. I called
my brother and asked him to take me to the emergency room. It turned out
that another friend of mine took me in to the ER three days before, but
they sent me home after two hours. When they found out I didn't even
remember it, that I didn't eat for so long, they tested me again, found
that I needed sodium salts that had been drained from me with all the
water drinking. The big liver doc came to see me, who wasn't my personal
doctor, but he knew my doc. I remember telling my real doc that I wanted
to take infergen, he recommended against it, but allowed me to do it.
What a disaster. The sodium salts that fed into me were exceedingly
painful, my vein was really hurting. I finally demanded that I be given
a painkiller if I was going to continue, and they took it out and
watched me. I had a sense of no reality while in the hospital. Honest,
they woke me up at 2 a.m., pushed me on a stretcher, took me down into
the bowels of the hospital basement to an MRI. After ten minutes, I told
her to get me out of there. I didn't know what they were doing to me or
why.
  I was really scared. Two days in a row they didn't give me
breakfast, without telling me, because I needed x-rays of some sort. I
never knew what was going to come next, and it was frightening to me.
I was one sick cookie. BCLD told me this. He said I had a 70 chance of
not getting cirrhosis, I could live a normal life, yadda yadda. That
perhaps there might be a better program that comes along to kill the
dragon. I came home last
Wednesday, and I pay careful attention to my diet.
So, this ends my attempt to clear myself. Russ, Elmo, Waterspider, and
all the others, congrats. Wish I were one of you, but it is not to be,
right now.
Songbird  
/////////////
I'm sorry to hear you had such a rough time of it.  Sounds like you had
a more difficult experience than most of us.  Maybe you could benefit
from a mainetance dose of Pegasys.  After you get back on your feet and
mind begins to clear, talk to your doc about it.  Get some rest and
don't feel discouraged.  
Elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile

Songbird, sorry to hear about the hell you've been going through.  I'll
wait with you for that next miracle cure.  Glad to hear you made it
home, and maybe the wait won't be too long.

Dwight

Dragon Slayers' Club:  http://geocities.com/dwightmspage/

Smiling Wickedly,  lissawis answered:

PLEASE... Continue to take care of yourself. I'm pulling for you in the
long run, and hoping something NEW comes along soon, to take care of
this once and for all for you.

Michael

Sorry it didn't work out Songbird.   Wow, sounds like you got hit by a
train!!! Heal up and I hope you feel better soon!

I am sooo sorry that it didn't work for you and that you got so sick.  As
long as you eat normally, shouldn't have any more trouble with a low sodium
level.  Our food naturally has some sodium in it, milk products, meats,
vegetables, bread..  Of course, processed foods have a lot more sodium, but
we don't really need them, normally, to get enough sodium in our diet..  The
point is that since you weren't eatin anything, your sodium went too low.

I'm sorry your hospital experience was so bad.  Your nurses should have kept
you more informed.  That is really poor nursing care.  However, on the other
hand, their admitting you and getting some sodium in to you probably saved
your life.  Having sodium out of whack can really make a person confused
too.  You can't make yourself understood, and what you think you are saying
comes out garbled.  I've had problems with heat stroke a couple times,
causing low sodium levels,  and it is a scary experience.  You think your
communicating, but no one is understanding.
Take care of yourself.  Something else is down the road.
Susie

On 24 Aug 2004 17:04:14 -0700, lissawis@yahoo.com (lissawis), in
message ID <f804c050.0408241604.270b9d43@posting.google.com>, in the
newsgroup alt.support.hepatitis-c wrote:

I'm sorry to hear that you had such a rough ride.
I'm glad to hear that you have survived it and live to fight another
day.

Best wishes.

Damn lissawis, I was hoping this was going to be the magic bullet for you.
I have (7) shots down and about and about 327 more to go. I have been
getting up and going to work everyday and try to drink my water. Went and
had labs done today with results back tomorrow. Damn you guys make me worry
but I'll give it everything I can.  Just like you lisawis and Thip. Keep
your fingers crossed!  buster