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Medical Forum / Diseases and Disorders / Hepatitis / October 2004

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Bad news

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Brian - 20 Oct 2004 16:52 GMT
I am new here and I thought I would share my story.....it helps me to
talk about it.
In May 2004 my father passed from prostate cancer......he was never sick
and still working 40 hours a week, woke up one morning and couldn't move
his legs......he died 3 weeks later. During those three weeks we did
alot of talking and making promises to each other, one of mine was to
get a complete checkup just to make sure I didn't have anything lurking.

 I had no way of knowing how my words to him would change my life forever.

 I returned home to Minneapolis and promptly got an appointment for a
complete physical, within a week I was diagnosed with Diabetes and was
devastated. I had never been sick a day in my life.
My doctor continued the tests and 2 weeks later called to tell me that I
 had Hepatitis C genotype 1a. By this time my world was closing in
quick......

After the initial shock of my recent diagnosis, I decided it was time to
start the battle. I was scheduled for an appointment with a Gastro Doc
and saw him on July 6th. He scheduled an ultrasound and a liver biopsy.
On July 29th my liver biopsy was completed and I got the results back
the next day..... Grade 2 Stage 3/4....Cirrohsis......my world just
keeps getting smaller.

My docs opinion was that I had been walking around with this monster for
 more than 20 years....more than half my life ! I turned 39 on July 7th.

I am now in my 13th week of treatment, 48 weeks seems like such a long
time. My platelets are dangerously low at 88,000 and they keep dropping.
I just hope they don't take me off tx.....I don't think I have a great
deal of options left.

Thanks for listening......last May seems so long ago now........
Gordo Mondragon - 20 Oct 2004 17:28 GMT
Brian -

You should have had a 12-week test to check the drop in your viral load,
how did that come out?  If you're still in tx then it must have been
good news.

Most people have drops in their red cells and white cells.  Some people
need treatment for it (and people can tell you specifically what that
is) and other people (like me) stabilized at low but acceptable numbers
(I'm in week 17.)

There's no reason to give up hope.

Another thing that has made a huge difference for me is going on an
anti-depressant.  If you're not doing it I would strongly suggest
talking to your doctor about it.  

You're more than 1/4 done.  Three months done.  If you can do that much,
you can get through the rest of it.

Gordo

> I am new here and I thought I would share my story.....it helps me to
> talk about it.
[quoted text clipped - 29 lines]
>
> Thanks for listening......last May seems so long ago now........
Libby - 20 Oct 2004 17:39 GMT
>I am new here and I thought I would share my story.....it helps me to
>talk about it.
[quoted text clipped - 29 lines]
>
>Thanks for listening......last May seems so long ago now........

Yeah.  So quit being such f.cking babies in here.  And pay no
attention to the man behind the curtain!

*Libby*
Brian - 20 Oct 2004 18:05 GMT
>>I am new here and I thought I would share my story.....it helps me to
>>talk about it.
[quoted text clipped - 34 lines]
>
> *Libby*
and thanks for the support.....biaaaaatch !
Brian - 20 Oct 2004 18:05 GMT
>>I am new here and I thought I would share my story.....it helps me to
>>talk about it.
[quoted text clipped - 34 lines]
>
> *Libby*
HEY LIBBY.....f.ck OFF !!
Lutze - 20 Oct 2004 18:38 GMT
> I am new here and I thought I would share my story.....it helps me to
> talk about it.
[quoted text clipped - 29 lines]
>
> Thanks for listening......last May seems so long ago now........
If it helps. My platelets dropped to 33,000 at about the same time in
treatment that you are at now. My Doctor told me to halt the ribavirin
at that point but I agreed to this only if I could return to the regime
when my platelets went above 90,000. I remained on interferon
throughout. It took five weeks of abstinence from the ribavirin before
my platelets reluctantly climbed back to the, seemingly at the time,
stratospheric heights of 92,000. I resumed the ribavirin at 600mg daily
as opposed to the 800mg daily I was previously taking. My platelets
remained at this level until the end of treatment.

If your physician thinks it prudent there is still a small buffer zone
for you to work with but this would mean your blood being monitored at
least weekly I would have thought.

I, unfortunately failed to clear the virus at the 6 month pcr 2 weeks
ago and will embark on a 48 week regime, within hopefully, two weeks.
I will not be interrupting the ribavirin this time and intend an
increase in dose of alpha2b, at the start, at least.

Signature

"Whale Oil Beef Hooked."

"Lu Tze."

Paul - 20 Oct 2004 20:23 GMT
On Wed, 20 Oct 2004 17:38:45 +0000 (UTC), Lutze
<lztue@Ankhmorpork.com>, in message ID
<cl67r5$qlg$1@titan.btinternet.com>, in the newsgroup
alt.support.hepatitis-c wrote:

>If it helps. My platelets dropped to 33,000 at about the same time in
>treatment that you are at now. My Doctor told me to halt the ribavirin
[quoted text clipped - 5 lines]
>as opposed to the 800mg daily I was previously taking. My platelets
>remained at this level until the end of treatment.

It's odd how different doctors operate.  When my friend's platelets
plummeted, they left the ribavirin dose alone and reduced the
interferon.  He spent most of tx on half and quarter doses and still
cleared.  He had a non-1 genotype though.
Signature

Paul

Use the reply by email facility in your
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Paul - 20 Oct 2004 20:19 GMT
On Wed, 20 Oct 2004 15:52:17 GMT, Brian <bfleener@mn.rr.com>, in
message ID <RQvdd.23057$mR.6768@twister.rdc-kc.rr.com>, in the
newsgroup alt.support.hepatitis-c wrote:

>My docs opinion was that I had been walking around with this monster for
>  more than 20 years....more than half my life ! I turned 39 on July 7th.
[quoted text clipped - 5 lines]
>
>Thanks for listening......last May seems so long ago now........

I'm sorry to hear about your bereavement and other problems.
Regarding the platelets, many docs start reducing the dosage if they
drop too far in order to head off the need to stop tx.  If this
happens, it is important to monitor the blood more frequently (often
weekly).  Weekly monitoring and adjusting the next dosage to suit the
results is often a good tactic to stay on tx.  Doctors can stop tx at
50,000 but it's more common to wait until platelets drop to 25,000 (I
have even heard of 20,000).  If you want to continue on tx (and with
cirrhosis I reckon you are short on choices), it may be worth
discussing the above with your doctor.  If he/she is half decent, they
will already be aware of that.
Signature

Paul

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

elmoemerson@webtv.net - 20 Oct 2004 21:10 GMT
Your story doesn't sound much different than many of ours.  You're in
the right spot, friend.  Hang out with us here.   Keep fighting!  
Elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile
Brian - 20 Oct 2004 22:54 GMT
> Your story doesn't sound much different than many of ours.  You're in
> the right spot, friend.  Hang out with us here.   Keep fighting!  
> Elmo
>
> http://community.webtv.net/elmoemerson/DocElmosHepFile

Elmo,
Thanks for the words of support......I think I will hang out for awhile,
seems like a nice place with lots of great people. I will learn to
ignore the trolls...
 I did make one mistake in my original post (brain fog) I just did my
11th shot and my big (12th week lab) will be done Nov. 1st with my
follow up appointment Nov. 10th. I'm still kind of worried about the
results, but I have decided that I am going to kick this things a.s one
way or the other. I know my options are somewhat limited if this tx
doesn't work but I refuse to let it win.
 I checked out your website and I think it's just the twist that I need
to add to my treatment. LOL
elmoemerson@webtv.net - 21 Oct 2004 17:55 GMT

Re: Bad news  

Group: alt.support.hepatitis-c Date: Wed, Oct 20, 2004, 4:54pm From:
bfleener@mn.rr.com (Brian)
elmoemerson@webtv.net wrote:
Your story doesn't sound much different than many of ours. You're in the
right spot, friend. Hang out with us here.   Keep fighting! Elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
Elmo,
Thanks for the words of support......I think I will hang out for awhile,
seems like a nice place with lots of great people. I will learn to
ignore the trolls...
    I did make one mistake in my original post (brain fog) I
just did my 11th shot and my big (12th week lab) will be done Nov. 1st
with my follow up appointment Nov. 10th. I'm still kind of worried about
the results, but I have decided that I am going to kick this things a.s
one way or the other. I know my options are somewhat limited if this tx
doesn't work but I refuse to let it win.
    I checked out your website and I think it's just the twist
that I need to add to my treatment. LOL  
///////////////////
You've got the right attitude, Brian.  Yep, ignore the trollish behavior
by some and stick around.  You'll get alot of good info and support
here.  By the way, are you a nose picker too?  :-)
Elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile
Gordo Mondragon - 21 Oct 2004 18:58 GMT
[...]

> By the way, are you a nose picker too?  :-)

I hate the way tx has messed with my boogers.  I wouldn't call myself a
serious nose picker but now they're either too dry or too wet to get a
good grab&extract going.
Brian - 21 Oct 2004 23:14 GMT
> [...]
>
[quoted text clipped - 3 lines]
> serious nose picker but now they're either too dry or too wet to get a
> good grab&extract going.
amen brother !!
elmoemerson@webtv.net - 22 Oct 2004 00:32 GMT

Re: Bad news  

Group: alt.support.hepatitis-c Date: Thu, Oct 21, 2004, 5:58pm (CDT+5)
From: ga_mondragon@yahoo.com (Gordo Mondragon)
In article <5078-4177E9F9-839@storefull-3256.bay.webtv.net>,
elmoemerson@webtv.net wrote:
[...]
By the way, are you a nose picker too? :-)
I hate the way tx has messed with my boogers. I wouldn't call myself a
serious nose picker but now they're either too dry or too wet to get a
good grab&extract going.  
/////////////
It's like I told Buster, man!  If you spray your finger tips with food
release (Pam), you'll be able to pick and fling to your heart's content.
Either that or you can spray the stuff straight up your nose, but it'll
give you a bummer head rush instead.
Elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile
Brian - 22 Oct 2004 02:57 GMT
>  
> Re: Bad news  
[quoted text clipped - 16 lines]
>
> http://community.webtv.net/elmoemerson/DocElmosHepFile

I want you guys to check out a little project I've been working on. It's
still in early beta but I think it will work out. Make sure you check
out the arcade and forum areas. Chat's not working co well yet but I'm
workin on it. Here's the link http://dragon-slayer.us
Gordo Mondragon - 22 Oct 2004 12:19 GMT
[...]

> I want you guys to check out a little project I've been working on. It's
> still in early beta but I think it will work out. Make sure you check
> out the arcade and forum areas. Chat's not working co well yet but I'm
> workin on it. Here's the link http://dragon-slayer.us

First impression: Very cool!
Daniel - 22 Oct 2004 15:54 GMT
Very nice, very nice indeed.

Daniel
elmoemerson@webtv.net - 22 Oct 2004 17:00 GMT
It is goood, Brian!
Elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile
Dwight - 21 Oct 2004 02:42 GMT
> I am new here and I thought I would share my story.....it helps me to
> talk about it.
[quoted text clipped - 29 lines]
>
> Thanks for listening......last May seems so long ago now........

Brian, hang in there, you'll make it through all 48 weeks of tx one day
at a time.  Ask your doctor about Procrit and Neupogin to help with
blood counts.  That was the only way I could keep my blood work high
enough to continue tx.  This isn't the end of the world, it is a slow
moving disease and you should have plenty of time to fight the dragon.
Give it all you can, and don't give up.

Dwight

Dragon Slayers' Club:  http://geocities.com/dwightmspage/
 
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