Riding a HepC Rollercoaster!

[Guest guest]

Hi All:

I'm new to this list and am not sure why I'm writing today, other

than I could use some support! I spent much of last night going

through the nearly 8000 messages on this board - what a great

group! I was especially touched by our moderator, LeighAnn.

Anyway, here's my story (well, the Cliffs Notes version!). I was

diagnosed with HepC in 1993. It was a total surprise because I

didn't and don't fall into any of the high-risk groups. At the

time, my ALT was ever so slightly raised, and my PCP said to just

come back each year and we'll keep an eye on it. This was true for

a couple of years, even after I moved and changed physicicans. I

would hear: " Oh, I see ALTs in the tens of thousands, yours is only

46 " . So I kind of stopped worrying about it, and hadn't had it

checked for a couple of years (stupid, I know, I know).

This past fall, I started getting a few nagging symptoms for the

first time (malaise, specifically, some URQ pain) and went in again,

to yet another new PCP (I've moved a lot!), and all the tests were

fine, except, again, a slightly elevated ALT of 46. An ultrasound

was fine, too. My genotype is 2b, and my viral load is up there -

9M. I've located a great (from what I hear) hepatologist here in

Philadelphia and see him on January 13.

I guess what I'm most worried about are the results from the

inevitable biopsy. I left my physician's office last month pretty

optimistic due to my blood test and ultrasound results, as well as

my genotype. From doing research I find over and over that these

results mean next to nothing! I could very well be stage 4 and not

know it. I feel stupid for ignoring this for a while, and for

feeling upbeat after I left the doctor's office. He himself doesn't

know much about HepC, apparently, because he basically told me there

was no scarring, because if there were, other tests on the liver

panel would be elevated. He also said that the fact that I've

probably been infected since 1984 (I had an appendectomy that year,

and my ALT was elevated for the 1st time in 1985 - but I had no

transfusion) and haven't had any problems is a good sign. I know

that symtoms don't necessarily correlate with damage...but what else

would cause symptoms to kick in so many years after being infected?

See? I don't know why I'm writing! I guess it just feels good to

get it out there! Unlike many people, I am SO eager to get on

treatment and get rid of this thing (at best) or get it under

control. I've even taken steps to lighten my load already (working

at home on Friday and Monday, etc). I'm pretty sure my opinion will

change when sides kick in, but I really feel I'm going to enjoy that

first shot, knowing that I've started to slay the dragon.

Anyway, this whole biopsy thing has me down (not the procedure, but

what it may find). That coupled with aching leg muscles, some URQ

pain and peripheral neuropathy at night have me anxious. I must

say, that I don't think I've ever felt fatigued, though, like so

many do. Anyway, I think Marie's story got to me the most..going

along in life and then finding out she has cirrhosis (are you out

there, Marie? How are you doing?).

Anyway, thanks to you all for listening to me babble. I'm sure this

is a story you've heard many times before - it's nice to know you're

here. My family is truly great about all of this, but I don't want

them to worry about me so I don't talk about it much with them...so

thanks for listening. Any words of encouragement would be greatly

appreciated! :-)

-- Phily