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Medical Forum / Diseases and Disorders / Hepatitis / October 2006

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hubby hepa-c..I'm so afraid!!

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DarlinDebo Dreamweaver - 24 Oct 2006 00:01 GMT
Hello Folks

I'm new here.  And I think I need some support.  Hubby was diagnosed
with hepa-c at yearly check up.  He was sent to a Gastroenterology &
Hepatology Dr.  The only thing I can tell u is that his enzymes were
4x's what they should have been.  The specialist has sent him to have
more blood work & an ultra-sound.  This Friday he goes for a liver
biopsy.  I've been searching the net for information.  Lots of it has
been over my head.  I've looked for a chat site but haven't been able to
find one that works with webtv.  I did find a chat for hiv, and they
have been good to me.  But I hate bothering them about hepa-c all the
time.  They have their own issues too.  Now I have found u folks.  All
of this scares me so badly.  Hubby is to go on a test study at the
hospital.  His meds will be free.  I know "free" is a wonderful thing &
I hope he will be monitored very closely.  I have read that the meds
make everyone very sick.  Dr has said that hubby will be on meds for 6
months - 12 months.  Said that he can cure about 50% of the cases.  How
sick will hubby be?  Will he be able to continue to work?
I even read where people are so sick that they won't do treatment.  I
figure he has 1-a.  Most do here in the states.  I know that's not a
good thing either.  If someone would kindly give me some advice, not
candy coated, I would sure appreciate it.  What does 4x's the liver
enzymes mean?  Thanks to all....Deb
Stretch - 24 Oct 2006 00:25 GMT
> Hello Folks
>
[quoted text clipped - 19 lines]
> candy coated, I would sure appreciate it.  What does 4x's the liver
> enzymes mean?  Thanks to all....Deb

You're in the right place. Try to get the actual labs and post them.
There's folks here who can decipher that stuff. Most important thing to
understand is that you are not alone. Make sure that your BCLD is a good
one and that you are comfortable with his staff too. Enzymes, generally
speaking, don't mean a hell of a lot except as a marker. Your BCLD will
probably want to do a biopsy to see the extent of the damage (if any) to
the liver.

Stay calm, get lots of information, and stick around this group. Many
years of solid experience here.
greyhackles - 24 Oct 2006 01:48 GMT
>Hello Folks
>
[quoted text clipped - 19 lines]
>candy coated, I would sure appreciate it.  What does 4x's the liver
>enzymes mean?  Thanks to all....Deb

Ok. Time to take a couple of deeeeep breaths. And calm down.

First, about the liver enzyme test results. ALT, AST, ALK tests (we call them
"LFTs" for short)  are used to get an idea of the level of inflammation
present in the liver. Lower is better, higher is not as good. But levels that
are four times the normal range are not extraordinary - it's not like he's
broken any records, I've known people with much higher LFTs that are still
walking the earth. Hell, my ALT was three times the upper end of normal and
I'm still here :-)

Next, it isn't obvious that the proposed test study uses the current "gold
standard" anti-viral treatment meds, so that tempers the value of the
following: the standard meds do not make *everyone* "sick". I can't cite the
percentages, but I would guess that 25% have almost no significant side
effects, 50% have significant but tolerable side effects, and 25% get
thoroughly hammered, with some of those falling out along the way. I was in
that last group, mostly due going deeply anemic, but with the help of a drug
that battles the anemia I was able to hang in there for the full 48 weeks.

Finally, for type 1s, 50% success is a bit higher than reputable studies
support, but then again, such studies don't tend to break down the results by
sub-type. I would expect g1A to do better than g1B, so maybe 50% isn't that
far off if it was given specifically for g1A. Fwiw, I was a g1B, and (knock on
wood) was treated successfully - the tests haven't detected any HCV virus for
the last two years now.

The ultrasound provides some useful information, like gross problems in the
liver, enlarged spleen, etc. It also can help locate a suitable target site
for a punch biopsy. The liver biopsy is The Last Word on the condition of the
liver, and while it isn't absolutely necessary (eg: someone could decide to
just do the treatment without being convinced via the biopsy results ;-) I
think it's worthwhile to have a liver health benchmark.

Bottom line: don't panic. In fact, try to take this whole thing in stride.
Hubby has "the flu", he needs to take his "medicine" so he can "get better".
No need to add a freak-out to that ;-)  And remember it's damned hard to
transmit HCV, short of blood-to-blood contact. Many of us here have had
serious relationships for decades without the Significant Other contracting
the virus.

So...Welcome to ash-c. Come back as often as you like.

Cheers

/greyhackles
Nosey Nanci - 24 Oct 2006 22:18 GMT
>Finally, for type 1s, 50% success is a bit higher than reputable studies
>support, but then again, such studies don't tend to break down the results by
>sub-type. I would expect g1A to do better than g1B, so maybe 50% isn't that
>far off if it was given specifically for g1A. Fwiw, I was a g1B, and (knock on
>wood) was treated successfully - the tests haven't detected any HCV virus for
>the last two years now.

I have a question about the above. Ok, once treatment is completed, if
the virus wasn't knocked out completely, will there still be a benefit
from it, say having a lower count than before treatment = less damage,
more life?

I am so pleased this NG exists. I was really scared when I found out I
have Hep C until I posted here. You guys seem to know more than my PCP
or maybe he just didn't have the time to discuss everything with me.
Thank God he sent me to a specialist who did know more and gave me a
sense that all is not lost.

Nanci
Sorry, I just want to know all your business.
Nosey Nanci
mags - 24 Oct 2006 23:00 GMT
Hi Nanci.  You remind me of my first few posts here.  It was a shocker
to find out I had Hep C.  I was very panicked and thought I was a
goner.  I live in Canada and our blood system was tainted and there was
lots on the news about Hep C which was quite frightening.  I was a geno
1b with a vial load of 1 million, stage 1 mild damage detected during
my yearly physical.  My Dr. indicated that even if I didn't clear the
virus with tx, I have given my liver a rest for 1 year and possibly my
liver has returned to an undamaged state.  I cleared my virus at 8
weeks and have remained clear 6 weeks after treatment.  The six month
test  is the real story.  He also said my chances increased to 70%
because I am female, cleared the virus early, low viral count and was
compliant for the whole time. (okay did not take the riba the last
week)  I was like Grey and very ill due to being anemic and picked up
kidney infections for 7 months.  It was this group and the will to rid
this virus that got me through this.  I am one of the 25% as Grey would
say who suffered - most do not.  As far as working I worked full-time
until Feb and was unable to work past then.  I have just returned to
work part-time until I am feeling stronger.  Once again not the norm.
Best of luck to your family.

Mags
former sufferer

> >Finally, for type 1s, 50% success is a bit higher than reputable studies
> >support, but then again, such studies don't tend to break down the results by
[quoted text clipped - 17 lines]
> Sorry, I just want to know all your business.
> Nosey Nanci
greyhackles - 24 Oct 2006 23:25 GMT
>>Finally, for type 1s, 50% success is a bit higher than reputable studies
>>support, but then again, such studies don't tend to break down the results by
[quoted text clipped - 17 lines]
>Sorry, I just want to know all your business.
>Nosey Nanci

That's a good question - and one that comes up in one form or another quite
often here. One can certainly debate this - I can provide lists of criteria
for either side - but the general consensus has been that if there is a good
viral response it's worthwhile continuing the full course of therapy, even if
SVR is not achieved in the end. By good, meaning at least the 2 log reduction
at week 12 that has been the gateway to the remaining course of treatment.

This outlook dovetails with the theory behind "maintenance IFN therapy",
duration aside, of course. Reducing the level of liver inflammation for a year
is bound to be beneficial.

Good response + manageable sides = do the full tx
Major sides, minor response = debatable
No response = no point in continuing

Not to frighten you, but just to make you aware:

My experience with HCV and the medical community at large has been a constant
source of disappointment (full disclosure: my HCV infection was the result of
blood transfusions three decades ago, so I'm probably still carrying that chip
on my shoulder). Nothing surprises me any longer when considering how little
doctors at all levels of practice know about the disease, its treatments, and
the side effects of both. Not to mention how to actually treat a patient on
anti-viral therapy - what things to watch for, for instance, that can easily
become life-threatening. Like the simple stuff that's printed on the fricken'
drug documentation, that most have never read. Clueless.

And yes, folks that manage to find a diamond in the rough for a treating doc
(there are a few) should indeed say a prayer for the rest of the cohort...

Cheers

/greyhackles
Jack Black - 25 Oct 2006 09:50 GMT
>>Finally, for type 1s, 50% success is a bit higher than reputable studies
>>support, but then again, such studies don't tend to break down the results
[quoted text clipped - 21 lines]
> Sorry, I just want to know all your business.
> Nosey Nanci

/////
The accepted wisdom is that tx, even without SVR, gives the liver a rest,
reducing fibrosis. I have my doubts though. I'm currently in week 25 and so
far my LFTs have been higher than before tx. And LFTs are supposed to be
some sort of indicator of liver inflamation and damage.

Jack
dBo - 28 Oct 2006 17:55 GMT
Your questions pretty much mirror mine when I was diagnosed back in Nov
- shock, lots of questions and so on. Lots of research so when I saw
doctors I knew what to ask about. Had ultrasound (no biggie) and liver
biopsy - not really such a big deal either except for having to
remian in the hospital for those few hours afterwards. I have always
found the "Know Thy Enemy" helpful in such a situation as this. The
more you learn about it, the better prepared you are to cope with it.
It somehow removes a lot of the "terror" of "not knowing"

I am type 1a and had an initial viral load of 6.2 milllion.Stage 3
liver damage (4 = cirrhosis)
and started treatement the first of January, Pegasys 180 injections and
Ribavirin 1200 mg a day.
antipdepressants right from the start to deal with this. I reached
"undectable" status at 12 weeks and have remained so since.

My "biggest" problem has been profound anemia, but since adding epogen
injections to the mix to boost red cell counts, things have improved. I
have worked all thru treatment with the exception of maybe half a dozen
sick days, but my job is sitting at a computer pushing keys, not
terrible strenouous. The "Brain Fog" made me just want to cry some days
when I couldn't figure out what I was looking for on the monitor.BUT,
by the same token going to work every day has been pretty much ALL I
have done for the past 11 months. Go To Work, go home, collapse.
Those around me who love me and want nothing more than for me to get
"well" have carried all else to keep home and hearth and the world
turning. I'm a lucky woman.

I was cruising right along, when I got a nasty head cold a couple of
weeks ago, which slammed my a.s into bed for ten days straight, high
fever, watching the wallpaper dance. Doctor finally decided it was time
to do a chest xray, and sure enough I have pneumonia. So I have been
out of work for two weeks already, and I suppose it will be at least
another week because they will not authorize my return to work until
the pneumonia is cleared up.

Four weeks to go - that takes me to Thanksgiving - both of my older
sons who live out of state are coming home for Thanksgiving, so it
should be a True Celebration this year, even if I'm no darned help with
the cooking ;)

Best thing I can tell you is that this treatment is no cake walk, but
it is doable. Be prepared for the fact that hubby may not be "himself"
during treatment. I know I have not been. Sounds like you have been
thru some tough times before, so all I can say it tighten up your
seatbelt, don't take things personally, and just keep putting one foot
in front of the other. You will find lots of good information here in
ash-c :)
anonymousone - 28 Oct 2006 22:36 GMT
> Your questions pretty much mirror mine when I was diagnosed back in Nov
> - shock, lots of questions and so on. Lots of research so when I saw
[quoted text clipped - 44 lines]
> in front of the other. You will find lots of good information here in
> ash-c :)

And dont let your imagination run away with you.
 
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