Hi All,
Ok, here's the story. In 1999 I was diagnosed with hep c, had 2 liver
biopsies over a 3 year span, the last one in 2003, I think. It showed
chronic hep c with mild inflammation - but no great progression from the
1st biopsy.
Dr. didn't know what he was doing on the 1st one and stuck the needle
staight into my liver from the top of my stomach by taking a wild guess
where he thought it was. It hurt like mad.
The 2nd one the Dr. went in through the side, which was more tolerable,
but the neck and shoulder pain was horrible. The nurse inflitrated the
vein on my hand, and kept putting saline and demerol in while the
automatic blood pressure cuff was squeezing my arm tight. Tried to tell
her to take it off, but she wouldn't listen.
My hand turned blue and there were massive blood clots all up and down
my arm. The pain was never relieved in the neck and shoulder either, of
course.
I got up and left, refusing the nurse who wanted me to stay longer
(after a time - until the bleeding stopped in the liver).
Went straight to the Dr. Ofc. to have him look at my arm and when he
peeked around the corner as I entered, he hid from me, and sent a nurse
out to tell me to go home and sleep with my arm propped up on pillows
for a week or so (flat on my back).
My dad was so mad he wanted me to sue the hospital, but I was afraid to
because I knew I would need help again. This is a small community and
there is only one infectious disease Dr.
The Dr. was planning on my having another biopsy in 3 more years after
the 2nd one, which would have been in 2006.
Instead, I called them and said "Just put me on the treatment and get it
over with.
I don't want another biopsy".
The nurse told me to come down and take a viral load test first, so I
did.
A week or so later she called me and said "You don't have it." I was
shocked! I had so many questions, but she was in a hurry and got off the
phone quickly. I did manage to ask her "does this mean I never have to
go back there and have another biopsy?" She said yes, I do not have it.
So, I left it at that.
The other day I called their office just to find out exactly what my
viral load test said. A different nurse who was more helpful, told me
it was less than 600 copies.
She said she was confused, too.
How could the 2nd biopsy show chronic hep c with mild inflammation, then
the VL
show nothing?
She told me I should go back and see the same Dr. and have more testing
done.
Well, I also have breast cancer, my mom and brother just died, and
things are a bit too much to handle.
I have an important trip to make in Oct. that I have been looking
forward to, and decided to wait until Nov. to get checked.
Personally, I am scared to death. I want to know, but I don't want to
know - at least not yet. Too many irons on the fire all at once.
Does anyone understand this?
Could I be one of the 15% who cleared it on my own? Was it a false
positive? Can
the chronic hep c, mild inflammation, grade 1, stage 2 be false?
I asked the nurse if there is a more sensitve test and she said no -
they just use the one . . . and less than 600 copies is considered
negative.
Real Weird, huh?
One of my other brother's has it, and several friend's of mine have it.
Yes, I am confused.
Thanks for listening and any advice would be appreciated.
spirit
Thip - 27 Jul 2007 21:26 GMT
WOW! What a story! I've been sitting here grumbling about my ineffcient GP
and wondering if I can find another one in this rinky-dink town, but I've
just zipped my lips.
Do you live within reasonable driving distance of a metropolitan area? By
"reasonable" I mean 100 miles. I live in a very rural area in NE Georgia
and was seeing a gastro in Athens (go Dawgs!), which is 60 miles. He's
since handed me off to Emory and Crawford-Long in Atlanta, which is about
100 miles. I do NOT like the drive, but the quality of care is worth it.
The pain in your shoulder from the biopsy was an air bubble. It's very
easily taken care of. What a bunch of morons! I don't blame you for being
afraid.
My advice to you is to find a GOOD liver doctor somewhere, even if it means
you have to drive a couple hours to get there. Have your bloodwork run
again and read by someone who has some idea how to hold the paper ride-side
up. If you get the same results, well, glory be. You're one of the
fortunate few. If not, at least you'll be away from the local morons and
can formulate a logical game plan.
Please stay in touch. That's quite a story you've got.
> Hi All,
>
[quoted text clipped - 87 lines]
>
> spirit
eileen - 29 Jul 2007 21:45 GMT
> WOW! What a story! I've been sitting here grumbling about my ineffcient GP
> and wondering if I can find another one in this rinky-dink town, but I've
[quoted text clipped - 112 lines]
>
> - Show quoted text -
Welcome to the group Spirit!
Wow you have your plate filled right now, after you get back from your
trip, ask for another VL test and see what comes up. I'm sorry I'm
not much help right now, I'm on treatment and I'm not able to think
straight most days. We would be interested how you make out and
someone else might have a better answer for you after the weekend.
(it's quiet during our summer in the USA.) Sorry though for all your
problems, some things just about break us, but you know it won't.
Take Care,
eileen