Who am I anyway?

[Guest guest]

Hello survivors,

My name is , and let me introduce myself by telling you why

I'm in this group (duh) and to ask to hear from some of you who

may be experiencing what I am right now. It's a bit long (this e-

mail), but there is no way to make it short. I'll try.

I was diagnosed with Hep. C., genotype 1A (YIPPEE) 5 years ago.

Cause is a guess, but probably got it from a needle stick while

working in healthcare. Anyway, my feeling is - how we got Hep. C. is

not as important as being in the present and staying as proactive as

we can. Also, 40% are of cases of unknown origin, so I don't waste

much mental energy on that.

As you know, 20% of us will develop cirrhosis eventually (decades

down the road). So, when I first got my diagnosis, I really didn't

freak.

I had a biopsy 2 1/2 years ago and showed very slight fibrosis. My

G.I. (now retired) decided that due to my history of depression, I

was not a candidate for the Pegasys/Copegus cocktail.

This past January, I had a second biopsy. Not only had I developed

cirrhosis in just two years but had developed level 4 cirrhosis! And

with a viral load of just 100,000...

My second G.I. put me on the cocktail (since I had developed

cirrhosis) and, I'm sure many of you don't even need to know how bad

it was. But in addition to all the usual symptoms, I attempted to

murder my father, take my own life, and finally had a gran mal

seizure. As Pegasist informed me, seizures have never been

documented before in the course of tx. in anyone before. So, I am no

longer a candidate.

My current and third G.I. is furious that she (2nd G.I.) gave me the

tx., given that I had already developed cirrhosis. She had given me

some hope - told me that by going through the tx., I had a 50/50

chance of a SVR. My current G.I. says once you develop cirrhosis,

the chance of Pegasys/Copegus provoking any response is less than

15%, and more like 5%...He will never place me on it again.

My general doctor and my G.I. communicate and I saw my doctor last

week. I asked him point blank: " be honest with me, do I have a life-

threatening illness, or am I terminal? " . He turned to me, shook his

head and said " , you're an intelligent man - I thought you

knew. You will not get better. You will only become sicker as time

goes by (right now, my only symptom is incredible fatigue setting in

at noon and the rest of my day and night is shot. So, already, my

quality of life SUCKS big time.) I told the doctor " I'm not praying

for a miracle to save my own life but (he treats my parents - Dad is

75, Mom is 72) please tell me - will I outlive my parents? That's

the most important thing to me. " Again, shaking his head, he

said " , your parents are quite healthy. They each have at

least 10 years to live each. You, on the other hand, have about one

year to live. " WOW...

I know we all are going through our own experience with this virus,

but I just had this conversation and I am reeling from it. Can't put

my head around any of it. Why in 2 years? Why with such a low viral

load? Why do I have so little time? Why, why, why? No self-pity.

None. In fact, I'm not afraid of death. Dying, sure. But most of

my pain stems from the fact that my parents are likely to watch their

only son die from cirrhosis, or cancer, or hepatic encephalopathy, or

liver failure, or portal vein hypertension complications, you know -

I don't have to tell you guys anything.

I will tell you that I'm completely overwhelmed. If you've read this

far, I thank you.

See, there is no short version. I've tried alternative medicines -

way too expensive and didn't even lessen my fatigue. I do have a

therapist. Am on an antidepressant. I can't stand this feeling of

helplessness. I am a very proactive person and get so much

conflicting information about nutrition, my head is about to burst

from it all! Also, I can't join any trials for Hep. C. meds in the

making because I have cirrhosis. And while I understand why, it's

just a little too ironic.

Anyway. That's my story of my Hep. C. and progression to Stage 4

cirrhosis. But I want you to know that there's a lot more to me

than this disease. I'm compassionate, insightful, dependable, and a

good listener and friend. So, please anyone who reads this and wants

to respond, please, please do. I know most of you don't have

cirrhosis (that's just a guess, though), so I welcome hearing from

anyone because this is my first post and would like to think of this

as a place to come and cry on-line. Or - better - to find friendship

and hope.

And this will be my longest e-mail I ever write, I promise. I just

wanted to let you know what is happening, baffling as it is.

Thanks...

Peace,

(jamiepup)