Hep C really sucks

[edhorfin]

I'm posting under harm reduction, but this could just as well be under rants...My latest liver workup, (MRI plus bloodwork), shows early cirrhosis. Discussion with doctor afterwards frightening as hell. He actually said at some point, I'll need to make contact with a transplant center in the area.

I'm 51, haven't done any IV drugs since 1985, haven't had a drop of alcohol in the same time period, live a fairly healthy livestyle. Except for pods, I take no drugs.

I was diagnosed with HCV 8 years ago, following routine lab work. I've never had any symptoms. Went thru 24 weeks of PegIntron and Ribavirin, only to relapse 3 months post treatment. Re-treated 8 months ago, never got down to zero viral load, so we stopped. The treatment really sucks, depression, loss of appetite, kinda feel like your jonesing all the time...Plus you've got needles around again. A depressed junkie trying to stay clean does not need to have a bunch of syringes around, but thats how it goes.

anyway, my liver had some fibrosis, and I was hoping thats the way it would stay for some time. Guess not. looks like this liver won't last me as long as I'd like. I'm only hoping to get to 75 or so. My youngest kid will be full grown, and I won't feel like I'm abandoning them. Now it looks like I'll need another liver before I'm 60, probably.

Fucking scary.

Never share anything if you IV. Not cookers, cottons, rigs, spoons, NOTHING. Not even once. Not worth it. The healthiest person you know may/probably has HCV, and doesn't even know it. \

Get tested. The sooner you know, the better. You may not ever need treatment, but not knowing is allowing the virus to work unabated.

Thanks for giving me a place to vent.

Ed

[upstate_007]

Thanks for putting all that out there Ed. I am sorry that you are in the situation that you are in, but it sounds like it could be a whole lot worse. And as always it could be a whole lot better too. Hopefully sharing your experiences will help someone else here to be careful and not get Hep.

[red26]

Yeah this illness is a nightmare even if you dont have it. Under "horror stories" theres a thread started by our very own beloved Jacky titled "shitting out of my mouth" for all of you folks here who havent been here long enough. This one truely embodies the the imagination of even your worst nightmares.

[Raz]

sorry to hear that man...hope you stay strong...I've never iv'd but i've drank too much an smoked too much smack/dirty birds yada yada, whats the first symptoms of havin the virus??

[chopstix]

Raz - I know you don't IV so as long as you don't share razors, toothbrushes, tattoo equipment or tooters for sniffing shit you should be fine. Funny thing about it is it's so easily transmitted outside the body but it's very rare for sexual transmission. Strange virus. Anyone who IVs should get tested though, the infection rates are truly astronomical.

Sorry to hear the news Ed. The treatments get better all the time - maybe one more shot at treatment? I have heard they are much, much easier and a lot more effective just in the last few years.

I was diagnosed + in 1994 by get this: a health worker who had done *ONE* shot of coke in the 60s and she was HCV+. I've heard that %95 of IV drug users carry the virus at some point but %15 beat it. I seem to be one of the lucky %15 - I've had two negative tests (undetectable), the last one 15 years after the point where I suspect I was exposed. I have a friend who was using with me at the time and she's HCV+ but healthy at this point. I should get tested again to be sure.

Scary shit, especially with all the APAP being consumed. Get tested people..

[upstate_007]

Scary shit, especially with all the APAP being consumed. Get tested people..

Definitely.

I did a lot of stupid and risky shit with needles, accessories and loose moraled women in my day but somehow managed to come out unscathed. I am truly lucky in that regard.

[Raz]

Thanks for the advice chop....I do know loads of guys who have it...Sometimes you get to wonderin...I have to tell me missus to stop usin me razor, but her chin itches me!:D

[Uncle Wiggly]

Raz - I know you don't IV so as long as you don't share razors, toothbrushes, tattoo equipment or tooters for sniffing shit you should be fine. Funny thing about it is it's so easily transmitted outside the body but it's very rare for sexual transmission. Strange virus. Anyone who IVs should get tested though, the infection rates are truly astronomical.

Good info Chops. Many people don't think about razors, toothbrushes etc... About ten years ago I got a call from a friend who was diagnosed with HCV and was telling me I needed to be tested. I couldn't figure out why because I'd never shared a needle. Then he reminded me of a camping trip we took and we had shared a razor. I went in but was negative. Since then I get tested once a year just because I have Crohn's disease and my GI doc considers it protocol. Pretty scary stuff though.

ED, Hang in there and perhaps get a second opinion as to your treatment options. Good luck.

[SHELLEY]

i've had hep c for like, 2-3 years
and it's never affected me

[reddragon3668]

edhorfin, I know that has got to suck. Being clean from needles and sober for 23 years and now having this shit pop up like this has got to be disheartening. I really hope you can get the medical treatment that you need and that you get better.

I know what you mean about wanting to hang around to get your kids grown and started into adulthood. The maternal side of my family have all died young. My grandfather passed at 39 from a massive heart attach. He also had MS. My grandmother died and 61 from a cerebral hemorrhage. My mother passed at age 57 from a massive coronary; she was disabled due to heart trouble for a good 8 years prior to passing. Her brother just passed recently at the age of 54; he had heart trouble as well and had underwent numerous heart surgeries starting at the age of 36. Thankfully, my father is still going at age 70 and his parents and grandparents all lived well into their 80's and 90's.

I am 40 and my health has not been the best, mainly due to back problems and diabetes. I often worry that I won't make it to see my youngest graduate and such. I know you can't think that way, and I try not to dwell on it. But my youngest daughter is 21 months old, so I need to make it until I am at least 58, one year older than my mother, to see her graduate high school. Of course, I want to be around allot longer than that. I want to see all my kids go to college, have children, you know, all the things we look forward too with our kids.

Try and keep your head up and concentrate on positive things. We will keep you in our prayers and hope that powers that be will shine upon you and keep you well and alive for a long time. I will remember you and send positive thoughts your way. Take care of yourself the best you can!

[Z-man]

I'm posting under harm reduction, but this could just as well be under rants...My latest liver workup, (MRI plus bloodwork), shows early cirrhosis. Discussion with doctor afterwards frightening as hell. He actually said at some point, I'll need to make contact with a transplant center in the area.

I'm 51, haven't done any IV drugs since 1985, haven't had a drop of alcohol in the same time period, live a fairly healthy livestyle. Except for pods, I take no drugs.

I was diagnosed with HCV 8 years ago, following routine lab work. I've never had any symptoms. Went thru 24 weeks of PegIntron and Ribavirin, only to relapse 3 months post treatment. Re-treated 8 months ago, never got down to zero viral load, so we stopped. The treatment really sucks, depression, loss of appetite, kinda feel like your jonesing all the time...Plus you've got needles around again. A depressed junkie trying to stay clean does not need to have a bunch of syringes around, but thats how it goes.

anyway, my liver had some fibrosis, and I was hoping thats the way it would stay for some time. Guess not. looks like this liver won't last me as long as I'd like. I'm only hoping to get to 75 or so. My youngest kid will be full grown, and I won't feel like I'm abandoning them. Now it looks like I'll need another liver before I'm 60, probably.

Fucking scary.

Never share anything if you IV. Not cookers, cottons, rigs, spoons, NOTHING. Not even once. Not worth it. The healthiest person you know may/probably has HCV, and doesn't even know it. \

Get tested. The sooner you know, the better. You may not ever need treatment, but not knowing is allowing the virus to work unabated.

Thanks for giving me a place to vent.

Ed


Man, sad to hear that, definitely scary stuff. But you know, I have to wonder where you'd be if you had just let the hep C go untreated. The drugs they use to treat this, interferon and the like, are not exactly good for your liver, and in fact many people with Hep C will never get sick from it, myself hopefully included. I've been C positive for over 20 years and I've never had the slightest impairment of my liver functions, let alone cirrhosis. I have no reason to believe that situation won't continue indefinitely. I'm extremely skeptical about this drive to immediately treat everybody who tests positive, regardless of whether or not they are actually sick. It seems to me that the ones benefiting the most from this strategy are the big pharmaceutical companies. Back before these treatments existed they used to tell us, don't worry, most people who contract hep C will never get sick from it, and only 10% or less of the ones who get sick will ever get cancer. Now that there happens to be a very expensive treatment option for the virus, that advice has changed dramatically. Given my personal situation of being untreated and completely symptom free, I'm sorry, but I just don't buy it.

[rockbottom]

ask your doc about silymarin- its the active ingredient in milk thithsile(sic) they give it to people with cirrosisis. hopefully it will help ~Peace~ --Rockbottom--:cool:

[edhorfin]

ask your doc about silymarin- its the active ingredient in milk thithsile(sic) they give it to people with cirrosisis. hopefully it will help ~Peace~ --Rockbottom--:cool:

My Doc DOES recommend silymarin and I've been taking it for some time.

[edhorfin]

Man, sad to hear that, definitely scary stuff. But you know, I have to wonder where you'd be if you had just let the hep C go untreated. The drugs they use to treat this, interferon and the like, are not exactly good for your liver, and in fact many people with Hep C will never get sick from it, myself hopefully included. I've been C positive for over 20 years and I've never had the slightest impairment of my liver functions, let alone cirrhosis. I have no reason to believe that situation won't continue indefinitely. I'm extremely skeptical about this drive to immediately treat everybody who tests positive, regardless of whether or not they are actually sick. It seems to me that the ones benefiting the most from this strategy are the big pharmaceutical companies. Back before these treatments existed they used to tell us, don't worry, most people who contract hep C will never get sick from it, and only 10% or less of the ones who get sick will ever get cancer. Now that there happens to be a very expensive treatment option for the virus, that advice has changed dramatically. Given my personal situation of being untreated and completely symptom free, I'm sorry, but I just don't buy it.

I wouldnt have treated in 2000 if I didnt need it.. After the bloodwork, the only way back then to see if the virus had done any damage was a biopsy. Mine showed moderate fibrosis, so treatment was the best course of action. My brother is HCV+ but has normal ALT etc ( liver panel bloodwork tests) and I recommend AGIANST treatment for him. The interferon is pretty nasty shit, even the docs dont like it, but my particular version of HCV has a 70% response and "cure" rate (sustained viral response). I just got dealt lousy cards. To Raz, Ive never had any symptoms. Just elevated liver enzymes on blood tests. Once symptoms of liver problems really start, things get ugly.

I can go a long time with full blown cirrhosis and not ever have any symptoms, lots of people do...I'm hoping thats what happens.

Also, the medical community has documented HCV passing from shared snorting devices. A little blood from one nose on a straw, or bill, into your mucous membrane and voila. So, its not just toothbrushes, syringes and razors...Also, any transfusion before 1994 was VERY risky.

I spent 1994 living with my sister and her husband in LA. He was a VERY successful entertainment lawyer, Harvard educated, brilliant and wonderful guy. He got HCV from a surgery transfusion in the 70's. His liver failed while I was there and I was with him when he had a transplant. in 1994, it was still considered experimental surgery and insurance didn't cover it. Bankrupted him and my sis. (cost close to a million then) at Cedars Sinai. Anyway, his transplant rejected, he died less than 6 months later, after another transplant.

Things have changed some since then, but not everything. At least insurance covered my 2 courses of peginterferon combo. 30K or so each time. And if I need a transplant 10 years from now, insurance will cover it,

Anyway, I appreciate all the positive vibes on this thread, I feel fine and was just a little pissed off earlier today. I've got a lot to be grateful for: A beautiful wife who supports the family right now, (shes also really smart) 2 great sons, one graduating from an Ivy league college this month (first marriage) and one 10 years old and hell on wheels, keeping me running my ass off doing guy stuff. (motocross, fishing, building treehouses, that kind of shit) so I'm though complaining. Lifes fucking great. I just want keep doing it for as long as possible. Also, the cutest new puppy Ive ever seen; shitting everywhere...

[Uncle Wiggly]

Hey Ed, I realize this kind of stuff pretty much sucks but, as you said, you're a very blessed man to have the loved ones around you. I know this is easy to say but try and think positively. It helps with the physiological stuff as well. Take care and best wishes.

[Raz]

Hey ED you seem like you got a good life mate...So i truly hope this isnt no set back...And your health remains good!!

[mrklean]

Hey Ed misery Loves company so let me give you some.......

Long story short I just got a letter from Roche saying I am kicked off the patient assistance program which pays for all the Interferon, and Riba. I only have like 3 shots left in the fridge, and about 5? months of treatment left. I'm undetectable in my bloodwork so it's working but the S/E's are driving me out of my mind.

I guess the first ones always free. Right? More than half way through treatment and now I'm supposed to find like $15000 for the rest of the meds; if I don't want the virus to come out of "remission" instead of being "cured".

The reason they say they are taking me off TX is the docs think psycologically I am too "unstable" to continue? WTF? I ask for dronabinol they tell me absolutely not, here try Compazine. Compare the S/E's, etc.. of these meds. How could I justify taking compazine to myself? I know I'm not psychotic and that is what drugs like compazine are for. Not, nausea/vomiting/ appetite loss.

So go to to the shrink because I know I need something and the gastro isn't providing shit(pun not intended). The shrink gave me Benzos. They help.....some. They will also cause a living hell when it is time to get off them. Now, this shrink want's me to take zyprexa because I can't sleep, without masses of benzos, and refuse just about all new ssri, antipsycotic, no mechanism of action, placebo, poison, BS.

Ed, are you getting plenty of Phosphadityl Choline, Acetyl Glutathione, and all other standard vitamins. Oh, and Chanca Piedra, in addition or in replacement of milkthistle for liver support? NADH, Inositol? hemp oil may be a miracle?

Peace and Love Brother,
MrK

[nick]

Yeah,I'm in pretty much the same situation.I have alcohol related cirrohsis.Plus as a registered addict my chances of receiving a transplant are slim-well zero.

I'm just hoping my liver keeps going for a few more years.


Is life worth living?

It depends on the liver.

Sign in my consultants office.

[mrklean]

Yeah,I'm in pretty much the same situation.I have alcohol related cirrohsis.Plus as a registered addict my chances of receiving a transplant are slim-well zero.

I'm just hoping my liver keeps going for a few more years.


Is life worth living?

It depends on the liver.

Sign in my consultants office.


Nick, you are someone on the board who has taught a lot of people including myself alot of lessons.....without having to learn them the hard way. We need you here to keep learning, and to share your knowledge/experience with us. Your liver will will undoubtedly keep going for as long as you will it.