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Medical Forum / Diseases and Disorders / Hepatitis / April 2005

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Glenn  Shehorn - 27 Apr 2005 13:13 GMT
I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
almost nothing about what to expect, don't know genotype. Do know some kind
of treatment consisting of two or more ingredients. She said the treatment
was  serious/ dangeous. Am extremely overweight, probably picked up the vrus
from transfusions related multiple surguries for gunshot and have been a
heavy drinker for years. Am 52
Glenn
Solo - 27 Apr 2005 14:15 GMT
One thing, do the treatment without reservations. Side effects can be
serious but follow the necessary blood work to monitor blood cells and you
should be alright. Do not drink anymore or especially while on treatment.
You will loose some weight while on treatment, because it raises your
metabolism a bit and you won't feel like eating most of the time. Take
aspirin for pain or Tylenol. Good luck!

I did the treatment 2 and 1/2 years ago and was cured. Went through hell but
it was worth it.

Chez

>I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
>almost nothing about what to expect, don't know genotype. Do know some kind
[quoted text clipped - 3 lines]
>a heavy drinker for years. Am 52
> Glenn
Waterspider - 27 Apr 2005 19:08 GMT
> One thing, do the treatment without reservations. Side effects can be
> serious but follow the necessary blood work to monitor blood cells and you
> should be alright. Do not drink anymore or especially while on treatment.
> You will loose some weight while on treatment, because it raises your
> metabolism a bit and you won't feel like eating most of the time. Take
> aspirin for pain or Tylenol.

Avoid asa/aspirin because it's rough on your poor lil liver; use
acetominophen (Tylenol) but don't exceed the recommended dose. Good luck to
ya.

Waterspider
Glenn  Shehorn - 27 Apr 2005 21:24 GMT
Thanks
Same thoughts I'm having. The not drinking thing is harder than I thought,
since I'm not formally working. Any good questions to ask the Doc and the
HVC Nurse when I go back next month??
Glenn
alias Drdigger

>> One thing, do the treatment without reservations. Side effects can be
>> serious but follow the necessary blood work to monitor blood cells and
[quoted text clipped - 8 lines]
>
> Waterspider
Michael Arends - 27 Apr 2005 22:40 GMT
Smiling Wickedly,  Glenn Shehorn answered:
> Thanks
> Same thoughts I'm having. The not drinking thing is harder than I thought,
> since I'm not formally working. Any good questions to ask the Doc and the
> HVC Nurse when I go back next month??
> Glenn

Just a few to think about. I am sure others will add to this...

QUESTIONS

How often do you check for thyroid and other bloodwork and/or
is there a plan like how often you'll be drawing blood
and what will you be checking.

What drugs are given (if any) if my blood count drops?
At what number would this be triggered.

What can I expect for treatment of any side affects.
are you (or a nurse) going to be readily available to help
with possible side effect management. WHO IS? You Doc? or a PCP?

IMO it's important to be able to see someone without waiting
too long if I do get serious side effects.  Whats YOUR Feeling,
and or Policy?

Also, what about a replacement doctor if needed
regarding coverage of sickness/holidays.

Can I have a copy of all my test results for my file. No REALLY.

Do you have any hesitation to put me on short/long term disability
if you find that I need it.

Will you be starting me on anti-d's now in preparation for my treatment
as it takes a few weeks for those meds to start to work in your system.
Celexa?    Also, do I need/do you prescribe anti-anxiety drugs.

As I said, just a start.
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Gordo Mondragon - 28 Apr 2005 11:20 GMT
> Thanks
> Same thoughts I'm having. The not drinking thing is harder than I thought,
> since I'm not formally working. Any good questions to ask the Doc and the
> HVC Nurse when I go back next month??

Not drinking at all is the best thing.  Cutting way back is second best.  
The more you drink, the faster the virus will cause liver damage.  
Period.

It's scary, but you have a virus that could kill you.  Getting yourself
healthier is hard but if there's ever been a time in your life that you
have to pull together the strength to do it, it's now.

I'd ask the doctor:

- When will they do the genotype test?
- When will they do a liver biopsy?
- What are the possible outcomes of the biopsy?
- How will the treatment vary based on which genotype?
- How will the treatment vary based on the state of your liver?
- One of the forms of treatment doses based on weight, one doesn't -
which one would you be getting?
- Some people need medication to deal with the mental aspects of the
side-effects, a common one being an anti-depressant.  What would they
prescribe, and how long before starting treatment should you start it?
- Some people need medication for sleep, or anxiety, or pain.  What
would they prescribe for that?
- Red blood cells and/or white blood cell levels can drop and there are
treatments to bring those back up.  Will they make those treatments
(Epogen, Neupgen) available to you?

Always suggested to take a notebook and write down the answers.  It's a
lot of new stuff to take in and you won't remember most of it.  Also,
later, if you have questions you can post them here.  

Good luck...

Gordo
Paul - 27 Apr 2005 16:28 GMT
On Wed, 27 Apr 2005 12:13:20 GMT, "Glenn  Shehorn"
<drdigger@earthlink.net>, in message ID
<AlLbe.179$7F4.29@newsread2.news.atl.earthlink.net>, in the newsgroup
alt.support.hepatitis-c wrote:

>I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
>almost nothing about what to expect, don't know genotype. Do know some kind
>of treatment consisting of two or more ingredients. She said the treatment
>was  serious/ dangeous. Am extremely overweight, probably picked up the vrus
>from transfusions related multiple surguries for gunshot and have been a
>heavy drinker for years. Am 52

The first thing is to stop drinking now - as in immediately.  If you
need medical assistance with this then seek it.  Alcohol is just about
the worst thing to mix with the hep c virus.  Before deciding when or
whether to treat the virus with the "two ingredients" (interferon and
ribavirin), you will need a liver biopsy.  This will give an idea of
how damaged (or not) your liver is. Your doctor will also arrange for
blood tests to see how the liver is functioning.  The rest can be
decided upol after the biopsy result has come back.
Signature

Paul

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Gordo Mondragon - 27 Apr 2005 17:55 GMT
> I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
> almost nothing about what to expect, don't know genotype. Do know some kind
[quoted text clipped - 3 lines]
> heavy drinker for years. Am 52
> Glenn

Glenn -

The first thing to know is that what's known about HCV isn't complete,
and that you may feel like you're hearing guesses.  That's because you
are - educated guesses, but there's a lot of missing information.  
Luckily, that's changing every month since there is so much research
being done based on how many people are showing up with it after having
it for a long time.

As others have said if you have HCV you can't drink alcohol in anything
but the smallest amounts, and if it has damaged your liver then you have
another reason to avoid it.  Your doctors will most likely want you to
have a liver biopsy (which is essentially shoving a big needle into your
liver and taking a sample) to see if there's any damage.  Not drinking
is VERY important.  The virus acts much faster in people who drink.

The treatment is no fun - it's six months or a year depending on
genotype.  Current treatment involves taking shot of interferon once a
week and taking pills twice a day.  It's not guaranteed to work, but you
may not have an option depending on the state of your liver.  There are
a number of people here who are on treatment or who have completed it (I
did six months) and the thing to keep in mind is that for just about
everyone it's doable.  

As far as it being serious, it is.  You have to look for certain bad
things happening and treat them seriously.  Dangerous?  Depends on your
definition of dangerous.  It's a medical treatment that for some people
causes serious side effects.  Most people it doesn't.  Most people
continue working, some people remain very physically active.  A few
people develop severe side-effects.  I think that heavy drinking when
you have HCV is more dangerous by far.

A doctor saying it was "dangerous", based on what I know now, would make
me wonder how much experience they have with it.  I'd ask, and ask about
the possible side effects, and how they would deal with them.

A lot of people here have a lot of experience and can help you sort out
what you're hearing from your doctor and what questions to ask.  They're
also a very supportive group, I couldn't have gotten through it without
the support I got here.

Keep us updated...

Gordo
Waterspider - 27 Apr 2005 19:15 GMT
>I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
>almost nothing about what to expect, don't know genotype. Do know some kind
[quoted text clipped - 3 lines]
>a heavy drinker for years. Am 52
> Glenn
You'll need another blood test to determine your genotype, and a biopsy to
determine the extent of liver damage. If you have to, be pushy to get this
done and get treatment started; the sooner the better in terms of a
successful outcome. Quit drinking, immediately, and lose weight. Alcohol
accelerates HCV liver damage and overweight people have a reduced chance of
success with treatment. Your treatment will most likely be pegylated
interferon (by weekly injection) with ribavirin (pills, daily) for 24 or 48
weeks (depending on genotype). Individual experience with treatment varies,
and although it's a bitch, it is do-able for most. Good luck, keep us posted
and ask lots of questions. The only stupid questions are the ones you don't
ask, and we've all be where you are. Good luck,

Waterspider
Glenn  Shehorn - 27 Apr 2005 21:30 GMT
Also have lost 38#'s with the counselling of a fine young man at the VA

>>I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
>>almost nothing about what to expect, don't know genotype. Do know some
[quoted text clipped - 16 lines]
>
> Waterspider
Mark Emerson - 27 Apr 2005 22:57 GMT
Some doctors won't even consider treatment until you have 6 months of
continuous sobriety. If you need medical detox...by all means get it. If you
can't stop on your own you may consider Alcoholics Anonymous.
Life is good
Mark

>I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
>almost nothing about what to expect, don't know genotype. Do know some kind
[quoted text clipped - 3 lines]
>a heavy drinker for years. Am 52
> Glenn
elmoemerson@webtv.net - 28 Apr 2005 01:50 GMT
Recent studies have shown that tx should not be withheld from
alcoholics.  Alcoholics have the same response rate as non-alcoholics,
tho their compliance rates aren't as good.  If someone is willing to
give up drinking, they should be allowed to receive treatment.  And the
same for those who couldn't.  
Elmo
/////////
Some doctors won't even consider treatment until you have 6 months of
continuous sobriety. If you need medical detox...by all means get it. If
you can't stop on your own you may consider Alcoholics Anonymous. Life
is good
Mark
"Glenn Shehorn" <drdigger@earthlink.net> wrote in message
news:AlLbe.179$7F4.29@newsread2.news.atl.earthlink.net...
I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
almost nothing about what to expect, don't know genotype. Do know some
kind of treatment consisting of two or more ingredients. She said the
treatment was serious/ dangeous. Am extremely overweight, probably
picked up the vrus from transfusions related multiple surguries for
gunshot and have been a heavy drinker for years. Am 52
Glenn

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

http://community.webtv.net/elmoemerson/TheFamilyAlbum
greyhackles - 28 Apr 2005 05:43 GMT
>I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
>almost nothing about what to expect, don't know genotype. Do know some kind
[quoted text clipped - 3 lines]
>heavy drinker for years. Am 52
>Glenn

You need to get educated - right now.

Read this document. It is one of the best HCV primers I've seen.

http://www.californiahcvtaskforce.org/pdf/HCV%20Clinical%20Pathway%20S.F.Version4.PDF

If after reading it you have questions/concerns/whatevers, bring them here,
and folks will try to help you along.

Have you had a biopsy yet?

Cheers

/greyhackles
Glenn  Shehorn - 28 Apr 2005 10:16 GMT
was told a biopsy would be needed, but as yet not scheduled
Glenn
> On Wed, 27 Apr 2005 12:13:20 GMT, "Glenn  Shehorn"
> <drdigger@earthlink.net>
[quoted text clipped - 25 lines]
>
> /greyhackles
Glenn  Shehorn - 28 Apr 2005 14:28 GMT
What are the ups & downs of the biopsy?
Glenn

> On Wed, 27 Apr 2005 12:13:20 GMT, "Glenn  Shehorn"
> <drdigger@earthlink.net>
[quoted text clipped - 25 lines]
>
> /greyhackles
Alias - 28 Apr 2005 14:56 GMT
Unlikely, but you might die. Most biopsies, however, are no problem. Some
people have a pain in their side for a long time, others feel no discomfort
at all.

Alias

"Glenn Shehorn" <drdigger@earthlink.net> wrote

> What are the ups & downs of the biopsy?
> Glenn
[quoted text clipped - 29 lines]
>>
>> /greyhackles
Susie Quill - 28 Apr 2005 11:01 GMT
Glenn,
I don't think there is much that I can add to what everyone else has
said.....except....glad you found us, sorry you have to be here though.
Keep coming back.

Susie

>I was recently diagnosed with HCV at the Leavenworth VA hospital. I know
>almost nothing about what to expect, don't know genotype. Do know some kind
[quoted text clipped - 3 lines]
>a heavy drinker for years. Am 52
> Glenn
 
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