Home | Contact Us | FAQ | Search & Site Map | Link to Us
Sign In | Join | Other 45 Sites in Network
Home
Discussion Groups
General
GeneralCardiologyVisionDentistryPharmacyLaboratoryNutritionAlternative
Diseases and Disorders
AIDSAlzheimer'sArthritisAsthmaCancerBreast CancerDiabetesEpilepsyGlaucomaHepatitisHerpesLupusProstate BPHProstate CancerProstatitisSinusitisTinnitus

Medical Forum / Diseases and Disorders / Hepatitis / May 2004

Tip: Looking for answers? Try searching our database.

Diagnosed. What now?

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
Matt - 18 May 2004 13:28 GMT
Greetings,

I was diagnosed last night with hep-C. The details were sketchy due to
just getting over a colonoscopy. My wife took most of the details over
the phone.

I'm a 45 year old male.

What can I expect now? What's in store for me as far as tests and
treatment?

Will my quality of life change?

Any info from will be greatly appreciated.

Thanks,

-Matt
elmoemerson@webtv.net - 18 May 2004 15:53 GMT
Hey Matt!!  Sorry to hear you were diagnosed with hepc.  It's not the
end of the world.  The next thing you can expect is a referral to a
gastroenterologist for further assessment of your condition.  He'll run
a battery of blood tests on you, will check your viral load and  hcv
genotype.  More than likely, he'll want to do an ultrasound and biopsy
of your liver.
If you think it's possible you've had it for awhile, a biopsy is
important to determine whether or not there is damage.  The course of
treatment (tx), if you should elect tx, will depend on the results of
your biopsy and your genotype, among other things.  
Quality of life?  How is your quality of life right now?  Are you
fatigued, depressed, angry, arthritic or show any other vague symptoms
which you can't attribute to anything else?  
I wrestled with this disease for 4 years almost to the day after being
diagnosed and seem to have beaten it.  I feel better than I have in
years and am still recovering from the last go at the dragon (virus).
They tell me my liver is healing as long as I don't abuse it and that
inside of 5 years, it'll be in pretty good shape again.  One thing I can
tell you....If you don't do the tx, you dont stand a ghost chance in
hell of beating it.
Let your doc advise you on whether you are a candidate for it or not and
make your own decisions.  
Stick around, there are plenty of us here who have gotten the same bad
news as you to swap stories and concerns with.

Elmo  
 

http://community.webtv.net/elmoemerson/DocElmosHepFile
Matt - 20 May 2004 16:21 GMT
Thanks for the words of encouragement. I really need it now more than
ever.

I talked to my doctor and he ordered another blood test. Just to be
sure. But I'm 100% sure I have it. I've been doing a lot of brooding
and getting angry. I need to stop this so I don't cause any more
damage to myself.

I have an appointment on June 7th to see a nurse and discuss/learn
about hepc. I'm going to demand a biopsy to see where I'm at.

I was diagnosed with Prostatitis, and maybe Inflamatory Bowel Desease,
just this past week. Good grief. Sometimes I feel like I'm at the end
of my rope.

I've lost a lot of weight. 20lbs within the lost month or so. Could
this be a symptom of hepc?

But then again I had some major bowel changes, and spent a few weeks
eating rice and apple sauce. Lost my job of ten years, found a new one
in a couple weeks, and I'm trying very hard to make an impression.
Stress city for sure.

I'm just very lucky that I have a very loving and understanding wife.
Without her I'd be a basket case. Well... a worse basket case. :)

It's difficult to keep my mind on my work. Did you guys have this
difficulty also? What did you do to try and stay concentrated? Any
help would be great.

Thanks for letting me rant.

-Matt
Alias - 20 May 2004 16:30 GMT
> Thanks for the words of encouragement. I really need it now more than
> ever.
[quoted text clipped - 29 lines]
>
> -Matt

Most people who have Hep C will die of something else. If you're not a
genotype 1, your chances of treatment getting rid of the virus is very good.

If you drink alcohol you should stop now. That means zero alcohol.

Alias
Russ - 20 May 2004 19:02 GMT
Just rant away, were here to listen. I was having increasing problems with
fatigue and persistent but slight nausea before I started treatment.

It is a heavy load to find out one has a "disease", especially a virus. I
called it the "heeby jeeby" factor. That feeling when you wake up in the
morning, feeling "dirty" and "contaminated".

My solution was to tell everyone and quit making it a secret. I haven't had
any negative responses in doing so.

Good luck and let us know how the blood test goes.

Signature

Russ
Remove "NOSPAM" for replies.

> Thanks for the words of encouragement. I really need it now more than
> ever.
[quoted text clipped - 29 lines]
>
> -Matt
elmoemerson@webtv.net - 21 May 2004 04:25 GMT
There won't be a day go by from here on til you get rid of the virus
that you won't think about it.  Acceptance, knowledge and action will
help keep you focused.  At least til you begin treatment. LOL.
Elmo
////////
Thanks for the words of encouragement. I really need it now more than
ever.
I talked to my doctor and he ordered another blood test. Just to be
sure. But I'm 100% sure I have it. I've been doing a lot of brooding and
getting angry. I need to stop this so I don't cause any more damage to
myself.
I have an appointment on June 7th to see a nurse and discuss/learn about
hepc. I'm going to demand a biopsy to see where I'm at.
I was diagnosed with Prostatitis, and maybe Inflamatory Bowel Desease,
just this past week. Good grief. Sometimes I feel like I'm at the end of
my rope.
I've lost a lot of weight. 20lbs within the lost month or so. Could this
be a symptom of hepc?
But then again I had some major bowel changes, and spent a few weeks
eating rice and apple sauce. Lost my job of ten years, found a new one
in a couple weeks, and I'm trying very hard to make an impression.
Stress city for sure.
I'm just very lucky that I have a very loving and understanding wife.
Without her I'd be a basket case. Well... a worse basket case. :)
It's difficult to keep my mind on my work. Did you guys have this
difficulty also? What did you do to try and stay concentrated? Any help
would be great.
Thanks for letting me rant.
-Matt  

http://community.webtv.net/elmoemerson/DocElmosHepFile
Susie Quill - 24 May 2004 09:33 GMT
> Thanks for the words of encouragement. I really need it now more than
> ever.
[quoted text clipped - 29 lines]
>
> -Matt

Matt,
Well, HCV never made me lose weight.  Your weight loss probably came from
the  bowel problems and eating rice and applesauce for a month.  If you
weren't eating any protein, you probably lost a lot of muscle....which isn't
a good thing for anyone.  Bowel problems can very well be a side effect of
HCV though.  Get rid of the virus and some of those symptoms may go away.

There has been some positive things in my life because of the HCV.  I'm more
knowledgeable about some things because of all the research that I have done
on it..  That has helped me in my field actually, and made me more open
to some things I was very closed minded about before, i.e. herbs,
supplements.   I do the research now before passing judgment.

There are negative things as well, of course.  I don't think a day has gone
by since the dx. that I haven't thought about it.
You just have to focus on what you can do.  Mourning is part of the process
though.  Mourning the idea of who we believed we were physically, and how we
felt our lives would turn out when it  seems to be going in a completely
different direction.  It is a terrible psychological loss.

You will get a handle on it and deal with it.  It took me a while though to
figure out that obsessing over it and reading hundreds of articles about it
wasn't getting me very far, except that I became sick of the subject finally
and stopped obsessing.   Starting treatment has given me a feeling of taking
back some control over my life.
This is the place to rant.....cause everyone here has been their.

SusieQ
Matt - 24 May 2004 16:43 GMT
Hi Susie,

Thanks for the post. And the words of wisdom. I can see that you've
experienced quite a bit.

The feeling of powerlessness is overwhelming. The feeling of not
knowing the full condition is worse. I'm a worry-wart by nature and
I'm sure that I'm dying of cirrhosis and my liver is on it's last lap.
I obsess every day. I get depressed and scared. I begin to feel
hopeless. Every ache and pain is now enhanced and cause for worry. I
fear to eat, fear not to eat. I feel lost, alone, overwhelmed,
terrified, depressed, anxious, and sad.

I need to know what my condition is. But I have to wait. And wait. And
wait. Each day is grueling. I live in constant fear.

But on the bright side I've stopped losing weight. My wife and dogs
still love me. My cats are pretty much indifferent about the whole
situation. I laughed my a.s off while watching Shrek2 yesterday. And I
slept like a log last night.

But!

I also surf the web and read hundreds of articles on Hep. Thus begins
the crippling cycle again.

I agree. The psychological impact is devastating.

I fear the worst, and hope for the best.

What was the treatment like for you? How long since the treatment? And
how is your quality of life now? (If that's not too bold to ask)

Thanks again,

-Matt

> Matt,
> Well, HCV never made me lose weight.  Your weight loss probably came from
[quoted text clipped - 28 lines]
> http://www.newsfeeds.com - The #1 Newsgroup Service in the World!
> -----==  Over 100,000 Newsgroups - 19 Different Servers! =-----
Alias - 24 May 2004 16:48 GMT
While you're waiting, get some Milk Thistle and start taking it everyday.

Alias

> Hi Susie,
>
[quoted text clipped - 65 lines]
> > http://www.newsfeeds.com - The #1 Newsgroup Service in the World!
> > -----==  Over 100,000 Newsgroups - 19 Different Servers! =-----
Susie Quill - 25 May 2004 10:50 GMT
> Hi Susie,
>
[quoted text clipped - 32 lines]
>
> -Matt

I've only been on treatment for 8 weeks.  I developed a condition called
fibromyalgia which is a sleep and pain disorder.  My last doc. finally
agreed that it was probably triggered by the HCV.  My viral load is
considered low,
126,000 or so, progress of disease slow, grade 2, stage 1, liver enzymes
generally normal.  Because of the loss of quality of life due to the
fibromyalgia, I finally didn't feel I had any choice and just couldn't wait
for anything better to come out.  This is the best time for me to do this
because I have some sick leave and insurance.

I just got home tonight from going to see Shrek 2 after work.  Laughter is
healing I think. It was good, wasn't it...   Middle of the week is sometimes
a good time for me to get to a movie,. so I take advantage of it when I feel
a little better.  .  Treatment on Friday makes me pretty sick thru monday's
and I'm taking sick leave most every Monday.  Some people are able to work
regularly without a problem.
Others quit work during treatment to help them get thru it.
I have type 2b, so only have to go 24 weeks total, but having some problems
with WBC (white blood cells) and RBC's (red) being too low at times and
since I don't have a hepatotogist, I have an overly cautious internal med
docs. and feel like I'm fighting to keep them from taking the med from me
due to side effects.

However, I'm going to get thru this somehow and feel very positive about the
final outcome.....in the long run.  At least I feel like I'm doing something
to take control of my life back.

Wish I could sleep like a log though like you said you did last night.  One
of the main reasons I'm doing this is to get my ability to get a good nights
sleep back.  Would be wonderful.

Once you find out exactly what your status is with a biopsy, you will have
the information you need to make some decisions.  The not knowing what the
situation is for sure is the worst feeling because a persons imagination can
go wild with every little ache and pain.  You have a good support system
though, and that can help so much.  You also have this list.

Worry is like a rocking horse, it will keep you busy, but won't take you
anywhere.  Try not to obsess and worry so much.  .  I know, that was really
easy to say, and it is a lot harder to do.

SusieQ

> > Matt,
> > Well, HCV never made me lose weight.  Your weight loss probably came from
[quoted text clipped - 28 lines]
> > http://www.newsfeeds.com - The #1 Newsgroup Service in the World!
> > -----==  Over 100,000 Newsgroups - 19 Different Servers! =-----
Don - 27 May 2004 20:59 GMT
>The feeling of powerlessness is overwhelming. The feeling of not
>knowing the full condition is worse. I'm a worry-wart by nature and
[quoted text clipped - 3 lines]
>fear to eat, fear not to eat. I feel lost, alone, overwhelmed,
>terrified, depressed, anxious, and sad.

Matt, welcome to the HCV club.  Don't over react to your diagnosis.
Only about 20% of people with HCV progress to cirrhosis.  And even
that doesn't mean your life is over.  I'm 46 and recently was
diagnosed with HCV myself.  I panicked also and assumed the worst but
I got over it.  Worrying is detrimental.  Take action.  Find out your
genotype and get your ultrasound and biopsy scheduled.  Chances are
your liver's not in too bad of shape and though it can be tough, this
disease CAN be defeated.  Even the nasty genotype 1 can be taken down.
When I was diagnosed I was prepared for the 48 weeks to beat genotype
1 but was very pleasantly surprised to find out that I had genotype 2
(24 weeks treatment and 80% cure rate).  Either way you play the cards
you were dealt.  You are not powerless in this struggle.  I'm not.
I'm gonna kick some HCV a.s.  I'll start treatment in June.  Good
luck.
Matt - 28 May 2004 21:51 GMT
Hi Don,

Thanks for the encouragement. I just hope that I fair as well as you. I
suspect I have the type 1, but won't know for sure. My first appointment is
June 7th. Then I suspect that will be when I get all my tests scheduled. If
I do get the oppurtunity to get treatment mine would most likely start in
July.

I wish us both luck. Perhaps we can keep in touch and swap hep stories? Do
you play computer games? I know of a Play By Mail war game that can be kind
of fun.

Anyway, thanks for the words all the same.

-Matt

> >The feeling of powerlessness is overwhelming. The feeling of not
> >knowing the full condition is worse. I'm a worry-wart by nature and
[quoted text clipped - 18 lines]
> I'm gonna kick some HCV a.s.  I'll start treatment in June.  Good
> luck.
Russ - 28 May 2004 22:29 GMT
Let us know how the test's go Matt, good luck...

Signature

Russ
Remove "NOSPAM" for replies.

> Hi Don,
>
[quoted text clipped - 34 lines]
> > I'm gonna kick some HCV a.s.  I'll start treatment in June.  Good
> > luck.
Paul - 18 May 2004 16:02 GMT
On 18 May 2004 05:28:34 -0700, matthew@puckertoe.com (Matt), in
message ID <6e101bc9.0405180428.541086ee@posting.google.com>, in the
newsgroup alt.support.hepatitis-c wrote:

>Greetings,
>
[quoted text clipped - 14 lines]
>
>-Matt

If you haven't already done so, get your doctor to refer you to a
liver specialist.
The specialist (or maybe your own doctor will do this) should have
blood tests taken to see how well (or otherwise) your liver is
functioning and to establish which genotype (strain) of hep-c you
have.  There should also be a biopsy done to see how much (if any)
liver damage you have sustained.  Depending on the result of the
biopsy, you will either be offered interferon/ribavirin treatment
(often horrible side effects) or advised to wait for an easier
treatment to come along in a few years.  Hep-c usually progresses very
slowly so the waiting option is viable for some people - especially if
their liver is still in good condition.  The side effects of
interferon/ribavirin can be nasty and some people have to be taken off
the treatment.  The vast majority complete the treatment but side
effects cannot be predicted as it's different for everyone.  I am on
week 10 of this treatment and, so far, it is tolerable though
sometimes unpleasant.  The biggest issues for me are low energy
levels, persistently dry mouth, and some pretty awful mood swings.
There is a lot more to making your decision than what I've said.
Everybody's life circumstances are different.  I found it a good idea
to tidy up a few things in my life before starting as I didn't want to
leave myself with anything complex to deal with.  LOL.  Then, in a few
days, on treatment, I walked out of a job, got dumped by my
girlfriend, and my old van fell to bits and I had to get another :-) .
Funny thing is, it was easier to cope with on treatment because I had
a bigger fish to fry (getting well).
Well, that's life.
I wish you well. Please keep posting, won't you?  And remember that
the only daft question is the one that you DON'T ask.
Signature

Paul

Use the reply by email facility in your
newsreader to send email

 
Sign In
Join
My Latest Posts
My Monitored Threads
My Blog
My Photo Gallery
My Profile
My Homepage

Start New Thread
Enable EMail Alerts
Rate this Thread



©2008 Advenet LLC   Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.