My HepC story

[Guest guest]

I'm really not much for talking about it anymore...I've nothing much

to input except to support those who are just now finding out about

their HepC and feel hopeless.

It is interesting though about how much is known now as opposed to

what was known back in 1998 when the HepC was found by my rheumatologist.

My rheum. kept finding the slightly elevated liver counts and just

happened to run a HepC test and that's how it was discovered. My

gastro still asks me periodically how come I was tested back then for

it...luckily I had a young and very smart rheuma doc.

I had TTP (a blood disorder where the body destroys it's platelets and

red blood cells) in 1988 and received over 100 blood products during

that time...this is where I assume I got the HepC from. Funny that I

had two more episodes of this BLOOD disorder and had a baby and still

the docs never knew I had the HepC until after all of that.

I went to see the Chief of Gastro at Presby Hospital in Dallas (he is

also Loeb's father if you've heard her songs). He ran the tests

and eventually I did the treatment with the inteferon and an

experimental drug that was just being approved by the FDA called

" Ribivarin " . Kind of funny to think of it now. I HATED those 3 shots

a week!!

I've only had the one liver biopsy and it showed minimal

damage...that's all I was told.

What is so different is that I never was told or even perhaps tested

back in 1998 for Genotype or Viral load. I went to see him

periodically but was never told (or tested?) to see what the viral

load was throughout the treatment. Needless to say...it didn't work.

I tried it two more times when the Peg came out but had to quit early

on due to the psychiatric side effects. I have a history of bipolar

illness.

I went to several different docs...I remember one I nearly slapped

when he told me the fatigue was from the Fibromyalgia and not the

HepC. EVERYTHING was blamed on the Fibro and nothing on the HEPC.

I've been back to him recently when my poop started turning a light

clay color (more than it had periodically done in the past). I had

previously tested positive twice before for the Cryoglobulemia (sp?)by

my rheuma doc., yet this last time he tested me for it the lab had

told me I would have to go to their main lab downtown because they

couldn't run the test there...but somehow they did and it came back

negative. Those jackasses said they ran the test to get the Medicare

money and my doc got a " false " result so he no longer had any concern

for the Cryo.

He did finally test me for Genotype which came out as 1b but I've

heard it can change genotypes after treatment so who knows. I was

also never told anything about taking the treatment meds at the same

time each day and/or exactly 12 hours apart...it was just " here it

is...good luck " .

So...here I sit. Reading...waiting...wondering...is it affecting me?

It's been 20 years now...wondering if I should be concerned?

I've had it with the doctors who STILL seem to not take it seriously

unless you're at the ESLD point. I'm on disability, Medicare coverage

sucks and the Part D coverage is a joke. I couldn't afford anything

new unless I got into a trial like I did with the Ribavarin.

I also think the treatment awakened the Fibro (my mom has Fibro and

did before they ever had a name for it...she was a champion at getting

the Fibro name recognized), CFS, chronic pain, etc. but I would do it

again if I had the choice.

I did have my spleen removed in 1997 after my last episode of the TTP

which has kept it away and hopefully for good! That I may regret

since i didn't know the role the spleen played in helping the liver.

It's VERY frustrating. So...that's it...I hope there is a treatment

that will " cure " us coming out sooner rather than later. Other than

that...what else can I do?

I do want to say THANK YOU to every one of you who have input in these

forums. Many of us " lurkers " totally depend on you everyday. Many,

like myself, probably don't have much of a support group at home with

the spouses and the kids and family. If any of you do have that

support at home...consider yourself blessed!!

Just thought I'd throw in my story...HEPC info has come a long way.

My ob/gyn told me (this was about 10 yrs ago) that he had recently

attended a forum at the hospital in which they encouraged all ob/gyn's

to test any of their patients who showed even the slightest elevation

of liver enzymes for HepC. I thought that was cool. Yet it is still

never talked about in the press...I just don't get that.

xoxoxo