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184420 tn?1326743408

Why aren't I dead yet?

or worse off... well, i could be... i was diagnosed about 4 years ago and had a biopsy right away and several ultrasounds, no inflamation and stage 2/grade 2, i treated for six months on pegasys and virimadine in a clinical trial (didnt work)

but... i know that i have had this since my late teens/early 20's, im 45 now and I drank HEAVILY until i found out, i mean alot all thru my 20's and 30's, sometimes days at a time, also alot of coke and meth use...

i dont understand the progression of this disease AT ALL and neither do any of the doctors out there if you ask me... i guess that's why it's so hard to find a cure...
22 Responses
Avatar universal
Only God knows why any of us are still alive. I heard genotype 3 progresses faster than type 1.  What genotype are you? Sorry your tx didn't work. It is a very slow progressing disease. I got it in 1977 from a blood transfusion and didn't find out about it for 20 years. 3 years later I had symptoms of tiredness. This is my first time treating. I will be done in 4 weeks. Better treatments should be available in 2009. I hope you can wait.
Take good care.
184420 tn?1326743408
they have no idea what genotype i am... i had 3 or 4 tests and they all said the same thing:

'Hybridization pattern for this HCV amplification product is atypical and cannot differentiate between HCV types or subtypes.'

also, my biop results:

mild lobular and periportal inflammatory activity (stage 2/4) spidery periportal fibrosis with possible focal bridging fibrosis (stage 2/4)best demonstrated on trichrome stain, no evidence of cirrhosis, neoplasm, or ganulomatous disease

and

hep c RNA by PCR is 697,000 IU/ml on 4/22/04, liver function tests showed a slight elevation of AST (44 U/L) and ALT (59 U/L)

Avatar universal
i ask myself that all the time. most of my friends from the 60's are dead from alcohol and herion and related causes. why not me. why has my hepc gone so slow i lived until tx came along (37 years). i am in aa is the only reason i am still here now. God has some mysterios ways. thank you God.
bobby
184420 tn?1326743408
ya really...

do you what any of that s**t i posted up there means anyway??  

lol

i really need to stop thinking about this or i will want a drink lol i just found out friend of mine just got put on the transplant list, he treated on and off for 4 years and it did way more harm then good he is only 48
86075 tn?1238118691
my take is that there are only models we can go by, and trends, and statistics, but there will always people who defy the odds...

my father will be 100 in March, and he's been a healthnut since he was about 45, (before that he used to smoke and drink) he exercises and eats really well, etc...it's prob genetics too, but all his brothers and sisters who did not have the same lifestyle are long dead...

there was a lady in my building who most always took herself and her health for granted, and by no means is healthy or looks healthy, she's pretty infirm, but she's going beyond 82 now? and she was always a smoker till 1 year ago, and a periodic alcoholic, meaning that she would get nosedive drunk on a bender for 4 or 5 days straight, about 10 times a year, maybe more...

along with that she eats all kinds of medications...now do I think if I did the same thing this lady has always done, would I  still come out of it alive and living that long? I definitely would not take the risk, besides which, she's alive, but not living well ..

our physiognomies are all different, and some people can take a lot more abuse then others, the trick is, we don't know which of us can come out relatively unscathed by a lot of abuse, statistics would indicate that most of us can't...

youre not the only one I've seen post your type of situation, but I still wouldn't risk it any longer, not with this disease....glad youre taking way better care of yourself, cause it's going to catch up with all of us, maybe some sooner, maybe some later....no one is superman...
184420 tn?1326743408
i know what you mean, i think about it all the time and i hate it but it seems almost like it doesnt matter really what you do or dont do ... i am trying thats about all i can say... how i could walk away from a 4 year heroin addiction with nobodies help when i was 21 and never touch a ******* needle again but i still pick up a drink or two or more even now that i know i have this is beyond me maybe im just stupid i dont know
Avatar universal
Your not alone - I had years of amphatemine abuse and lots of drinking on fri and sat nights !!  lots!!! all up til my mid-thirties and im 43 now...Im waiting for my biopsy results and im totally sitting on pins and needles.  all we can do now is take care of ourselves , eat right , etc. etc.  I drank wine every night til i found out 4 months ago i have hepc, im a 1A with a viral load of 12 million.  Im just praying i can hold out for the new drugs coming out - if not I'll have to treat now.  You have  a long life ahead of you  - just take care of yourself .  Just want you to know our backgrounds are very similiar and were gonna be ok.

stacy
184420 tn?1326743408
thanks dear stay positive & happy its a good way to be and dont dwell on this all the time like i have for the last 3-4 years haha

i hope your biop comes back 0/4 ... im praying for ya
Avatar universal
Sometimes we have to change the subject and think about other things for awhile. It's not healthy to think and talk about this disease all the time. There's so much more in life and so much to do. I call it taking a vacation from thinking and talking about it. Take a breather. Good luck and take good care. This is only part of life, not all of it, not even half of it.
86075 tn?1238118691
well said, I always say to still keep up with hobbies, interests, things that make life good for you.

But all in all, let's take care of ourselves! first and foremost, this disease ain't playing, don't play with it!!!! off of my soapbox now, got suds in my mouth....lol...
Avatar universal
Your post is exactly what i needed to hear - this disease for months has consumed all my thoughts - im gonna make myself stay off this site for a few days - i need a breather from hep c.  Thanks and God bless everyone.
217229 tn?1192766004
Pj - and all...

Just FYI - I was healthy - never did drugs - never drank a lot (not a teetotaler --- but most definetely not a drinker by any means)... I was heavyset (not severely obese but seriously plump)... but overall, healthy until I started having side effects.

I went to the dentist regularly - I got checkups every years - yanno?

Everyone was shocked I had HCV.

My progression from point of transmission which we know happened after 1991-1992 but prior to 1996 went so fast as far as level of symptoms and problems.

I've been hearing how people have had HCV for 20 or 30 years. I would not have made 20 or 30 years.

So I think how blessed they are --- and how blessed I am for being able to achieve SVR so rapidly.

Each person - and maybe every genotype is different for HCV.

But look at George Burns --- whattttta man! Smoked everynight - drank like a fish --- and look at his age.... WOW!

So each person is different.
Hugs,

Meki
217229 tn?1192766004
Ahem -- Not that George Burns was HCV pos... Just that he achieved a life of longevity.

And --- well Grandma is right --- Sometimes you just need to not let it override your life...

Live your life... Live healthy - and enjoy every moment.

Hugs,

Meki
184420 tn?1326743408
how do you think you got it? are you/were you genotype 3?  i feel guilty as hell when i hear of someone who never drank, never did drugs, etc, and its just eating them up and here i am rolling merrily along...  but then again, you got rid of it right?  what stage/grade were you and has your situation improved since ??

life sure is not fair sometimes ...
Avatar universal
If I am learning one thing from the experience of having hepc, it's that life just is; it really isn't fair, or not fair, we make those judgments, and that each moment is a gift .... i need to remember that and live with a hightened sense of the value of life.  please, dont feel guilty as you said in your last post, some of us didn't do the same things,  but we are here together in this forum, helping each other and learning how to live with what we were handed.... this is a cool forum for getting help, encouragement or just expressing what is inside that we can't share with the general john Q. public,  LOL
Hugs to all,
R
Avatar universal
i cant help but feel guilty...i was born & raised catholic... we have LOTS of guilt

haa

i think you are right life just IS ... it is very strange but right before i found out about this i was really searching for a reason to stop drinking it wasnt alot of fun anymore... i guess be careful what you wish for right ? hep to me is both a blessing & a curse, sometimes i wish i could go back to before i knew about it ignorance is bliss haha but i dont want to be that person anymore either but i dont know who the hell i am really i dont think i ever did i have spent my ENTIRE life drinking/using drugs and now alot of the time i just feel lost

163305 tn?1333672171
Who said life was fair? I always told my kids that it isn't.

    Be happy for what you have and what you can enjoy even if that is simple things like breathing the air and seeing the sky.  
     I have a good friend with AIDS. Doctors wanted to study him since they think he shouldv'e died 10 years ago. Obviously it isn't his time yet and it isn't yours either.
  
    A few weeks before starting tx, I was sleeping in an old wooden guesthouse in Bangkok, woke up at 4.am. to a man yelling and the room next to mine was on fire.I lived and got the message loud and clear. I won't die until its my time. Same for you.

  If you really feel so down you want a drink, I suggest doing something FOR someone else. Go out there and help somebody. It'll make you feel better than a cry-in-my-beer drink.
Avatar universal
so i take it from my posts here that you think im feeling a little sorry for myself...

well hahah yes i am... and i think im entitled to once in awhile anyway... having this disease suxxxxxx

and you dont know anything about me so dont assume i DONT ALREADY go out and HELP people

i am very happy for what i have, i could very easily have contracted aids myself dont you think im aware of that???

maybe i was posting here for a little sympathy, i get all the stop feeling sorry for yourself **** i need from myself thank you very much
Avatar universal
my initial purpose of this post was does anyone understand the progression of this disease at all??? why are some very sick and some not, no matter what they put into their bodies??  

its just seems that by now they might have some more answers but i guess not...
Avatar universal
What is that saying?
"Ours is not to reason why?
Ours is to treat (do) or die!
Sorry if that doesn't sound helpful, but we just need to keep putting one foot in front of the other.
Hugs to all of you.
Teri
86075 tn?1238118691
just my two cents, again, but I thought Orphanedhawks post to you was very insightful, my advice? maybe don't dismiss it outright...

Seems to me you have a drinking problem and/or drug using problem, or you probably wouldn't reference it so darn much if you didn't...the one thing most alcoholic personalities have in common is finding ways to feel guilty about something (what better excuse to drink then to mull over what a screw-up one is?) just as long as you say this yourself, fine...

but if someone else says anything about it, then all hell breaks loose...And what do they say in AA? If an alcoholic didn't sit around and nurse their resentments and screw-ups, what on earth would they do with all their free time?

..youre the one talking about how empty your life is without drinking, it's there in plain type...she only offered a tried and true suggestion to help, something the Bible says to do, the Koran, The Buddhist texts, most every major religion and philosophy in the world....And AA----go out and help someone or some thing, something besides yourself, even if youre already doing this like you say you are...

I'm one of the most self-centered people I know, I know this cause I know myself relatively well, lol...if I didn't help other people or animals, whatever I do, I go up my own a-hole...been there too often, know what that's like, it's better to go seek something outside myself...

if this posts comes off too preachy for anyone's tastes, sorry, got that *preachy feeling* today, it'll pass though...sorry in advance for the matter-of-fact bluntness, but I have appreciated when people have given me reality checks in the past, maybe you won't, but that's okay too...
163305 tn?1333672171
           No, I don't know you and you don't know me.
I'm really sorry you seemed to take my reply to you as judgmental. Instead of giving you a shoulder to cry on, I tried to suggest ideas to feel better. We all feel down sometimes which is a wonderful thing because then we get to feel up too!

   If I suggest meditation, will you also tell me I am unsympathetic and not compassionate? It also helps me and all I can do is try and share whats worked for me.

   If you can learn why HCV hits some hard and others not at all, you will win the gold ring! All we know is that some things are harmful to our livers and others aren't. The worst thing we can do to our livers and the virus, is drink alcohol.  

   And PLEASE, I have a decompensated liver and don't cry about it. I am enjoying my life. I hope you find a way to enjoy yours.
                                                                
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