Need to know all the facts about my hep C...please

Hello everyone,I think I stumbled into the right chatroom, I am 46 and was diagnosed w/hepC about 5 years ago and I traced it all the way back to my early twenties when I was giving plasma right around when AIDs reared it's ugly head, and they were still re-using some of their already used tubing and other I.V equipment. I also am a recovering alcoholic with about 4 years sobriety,

I had a liver biopsy and was told My C  or liver is at stage 2 and I  had the "good" genotype (and moderate viral count), I assume that means the one that is more sensitive to Tx.

Of course I wanted to go on inteferone, but then I started hearing all the horror stories of how terrible you feel for 6 months and that is was 50/50 or sometimes worked and the virus came back...etc I cant distinguish the b.s from the truth.

My doc says that unfortanely due to a chronic depression/anxiety condition I suffer he would be reluctant to put me on iterferone

due to it's reputation of causing occaisional suicides because of it's side-effects, he said that since I stopped drinking and my panels were not too bad (whatever that means)I should just wait it out until a new cure comes around which he claims is just around the corner, now he is a gastro/intestinal specialist and I have no reason to doubt him but I am seriously scarred that I a have a ticking time bomb and should do something about now or just keep living clean, so far I have never had any external symptoms such as jaundice nor fatigue or any symptoms..Can anybody tell me the real scoop? Are the viruses multyplying like crazy til they reach critical mass and then it's too late, or does this doc knows what he is saying? I have had a couple other regular doctors look at my liver panels and they all said that aside from slight elevations in certain areas everything appears normal. I know they have refined the interferone and it isnt as violently reactive, but still  it doesnt sound like a sure thing, it sounds like the last chance saloon.

can somebody clarify anyof this for me I would be most appreciative, thank you all, peace, boulonman

Buolonman, welcome to HW. I could not agree more with Pinkgrandma. From what you are saying, about your viral load and your Genotype is it a 2 or 3? This would be the best time physically, before cirrhosis to treat. I believe the odds of clearing the virus with a genotype of 2 or 3 is better than 50-50. The treatment is shorter also for this genotype. The lower the viral the better the chances are to clear also. Many people doing the tx are taking antidepressants. The treatment is tough, but it is do able, I have many friends that have done it or are doing it. 

The best thing to do is to educate yourself on hepC, so you can make a very informed decision on whether to treat or not. Good luck to you!

Teresa

Boulonman, what caused you to be tested for hep C? Have you had a liver biopsy yet? If the hep C is chronic active, it is still attacking your liver (what I have.) If it is just chronic, it means you were exposed to it at one time, but your immune system kicked it out.

I had fatigue for months before a new doc ordered hep C testing. My liver enzymes weren't and aren't terribly high, although higher than normal. I was referred to a hepatologist and had a biopsy, which showed the hep C to be chronic active. I tried two rounds of interferon, and both times my white count plummeted too low and I was taken off. From that point, in '93, I did nothing. I had contracted hep C in '68 or '69. In the past 3 years, I have been increasingly fatigued, and 2 years ago was diagnosed with liver cancer. I've had treatment of that, but there are still some cancer cells remaining. Therefore, I am set to undergo surgery next Tues. to remove the right lobe of my liver and my gall bladder. I was just told yesterday that there is only a 50% chance that the surgery can be done, as there has to be some good liver tissue that can regenerate. This will not be known until I'm opened up. If it happens that the hep C has damaged my liver too badly to have the surgery, I will be closed up and nothing more will be done...and I would have one year to live.

I wish now that I had tried the treatment again when the combo came out (combination of interferon and ribavirin.) Untreated hep C will result in cirrhosis and/or liver cancer, or end stage liver disease. I understand where you are coming from, but I can tell you from my own experience that it is best to try the treatment. Get with a hepatologist and get your questions answered.

You cannot escape the progression of the disease without treatment...of that you can be sure.  You could possibly get unpaid medical leave, to secure your job.  Also, apply for SSI...if you have troublesome treatment.

Connie

Post Edited (hep93) : 5/22/2007 9:44:38 PM (GMT-6)

Hep93....I was told I had it about 15 years ago during a normal bloodtest, they were just checking my liver panels because at that time I was a chronic alcoholic, I didnt really pay attention to it out of ignorance until recently when society started to accept it rather than demonize it like they did aids. I beleive I caught in the early eighties when I experimented with intrevenous drugs
I had a biopsy done 2 years ago that revealed genotype two/stage 2 Hep C. I have been clean/sober about 4 years and my liver panels are all pretty normal except for a couple of things that are high but not execessively so, I am not sure but I think they mentioned a 3 million viral count number which they told me was moderate, I have had any symptoms or pain nor fatigue, if I understand you correctly from 69 to 2003 you carried the virus but it now only started to become active and is destroying your liver relatively fast? So there are two stages then? chronic non-active and chronic active? And once it is activated it destroyed your liver rather quickly... Anyways, yeah I hear you, this is the time window left, if I wait any longer it will be too late, I already am on disability for a pulverized lower back in a car crash do I really dont have any excuse not to do it ..
I am just chickencrap about the interferone, tell me just how bad is it? Incidentally I am truly sorry it didnt work for you, the liver is an amazing organ I read you can live on 20% of it and it rejevuanates, I'll pray for your succesfull recovery, thanks, peace..boulonman

Boulonman, I contracted my hep C from IV drug use (shared needles) between March '68 and Nov. '69. After I kicked that, I started drinking alcohol heavily, alcoholically, from 1970 until 1986, when I joined AA and stopped. I had been clean and sober for 7 years when I was diagnosed with chronic active hep C in '93. It was in 2005 that I was found to have liver cancer, during my yearly abdominal sonogram. I wasn't on treatment long enough to experience any side effects, other than the low wbc's. I had to inject myself with the interferon 3 x a week (that caused some flashbacks) in my thighs.

Grandma, I have heard of some people going into remission or being wrongly diagnosed. In my opinion, though, without treatment hep C will cause liver damage/end stage liver disease, cancer, or cirrhosis.

Boulonman, it normally takes decades from the time hep C is contracted until one becomes symptomatic. However, in the interim, the virus is doing its damage. I urge you to get treatment before the virus results in a life-threatening disease. Congrats on your sobriety! It's the best thing you can do for your liver.

Hugs,
Connie

That's a relief to hear you say that, Boulonman! I will be offline for several weeks, but please do post on your progress and I will catch up once I'm home again.

Hugs,
Connie

Boulonman,I am glad to hear you are going to start the process of "Slaying the Dragon".  I have seen many from another site I go to, that work while on treatment. The doctors do watch the blood counts closely, I believe some of them take Procrit to get the blood counts back up if they drop too low. They usually do their shots when they are off for the weekend, so they can recover and be back at work.  My husband, found out he had HepC in very advanced stages of cirrhosis, he is now post liver transplant (March 16, 2007). He was also a heavy drinker and used IV drugs many years ago. We know he will definitely have to take treatment, just not sure when yet. I can tell you End Stage Liver Disease, is not a pretty picture at all, I dealt with it for about 2 solid years. Best to avoid it if possible. It was a living nightmare. I also tested positive for the antibodies, but my body was one of the few that kicked the virus on it's own, I think it happens in around 25% of the cases. I was exposed to it by my husband. Just know we are here for you if you need us.

Teresa

TDT; Thank you for sharing, I am sorry your husband is paying such a high price for doing the same thing I have, I must be either extrememly fortunate or dumb luck, cause I can trace my infection to exactely the time and place, it was a plasma donor center that paid you 10$ and this was in the late 70's before AIDS so they didnt use precautions and re-used alot of their tubing and needles, that and I dabbled with IV drugs in the early 80's which when I was first informed I was infected but back then I didnt care, I was too wrapped up in drugs then alcohol became my friend to get away from the drugs and I drank heavily for 20 years. Now I have been clean and sober 4 years and my biopsy shows that I am at stage 2 of HepC and have the "good" genotype which I assume means the one that responds well to Tx...And my viral count is moderate, not too high. but not low.also my liver panels are all normal except for being a tad high in certain areas buy within limits, the longer I stay off booze the happier my liver seems to be getting, what an amazing organ! God truly knew what he was doing when he blessed us with this organ!!!!! Amen!! I have seen alot of my friends that have had it around the same length of time as me and even some have had it alot less time than me, some drink, some dont, must do. but alot of them are already at end stage and youre right TDT, It is an ugly sight to watch someboby you care about deterioate and suffer so quickly. me I have never had any sympoms yet and by reading all of what you good people say this is the window of opportunity for me, that if I dont take it now, I may lose a chance to kill the bug and end up like my freinds and some of you.
the only thing that frightens me is the horror stories I hear about the Tx...Are they true? Can you or can you not function well enough to go to school? the reason I ask is because I am on social security cause I was in a bad work accident that pulverized my lower spine and pelvis and now attend school full time in order to get my degree in Alcohol&Drug counseling, my finances are just barely enough to finish the 2 year course. I cant afford to take a full semester off. I know everybody reacts differently but can you guys give me an idea if the Tx is tolerable or not? Is it a daily injection?Dont they give you drugs to ease the side effects? what are the side effects? Are they 24/7 or do they wear off and come back in cycles? My gastro/doc is discouraging me from taking the Tx because I suffer from a severe depression/anxiety disorder and interferone has a reputation for sometimes driving people to suicide and that is what scares me..Is it really that bad? I thought they refinned it and it now has less side effects??? Is it 6 months or one year Tx? Is it true that is only 50/50 chance that it squashes the virus and sometimes the virus returns even though it shows up negative for quite some time, my doc says if I continue to live a clean life style like I have been doing that I should wait a few more years until they come out with a new treatment that is alot better and isnt as harsh, he says they are working on one and it is right aroung the corner. Is he BSing me cause he doesnt want to be responsible for me if I do something stupid(suicide) while taking the Tx. I dont understand that cause I am being treated and monitored for my disorder and now that I know it is a disease not reality, I would never do anything and call the right people if I came close to wanting too. I know it sounds stupid to you guys that I would gamble my window of opportunity because I dont want to lose 6 months of school and am really scared of the side effects, please convince me otherwise. before coming to this site, I just wanted to know a few facts, now I am seriously contemplating taking the tx, you guys are really cool and compasionate to share your pain and try to guide me to do the right thing, I really appreciate it and I am sorry for all of you for whom it may be too late, I know just as well as you that back then when we were having fun, we never thought of these consequences or never even heard of Hep C.. I wonder if we would have chosen a different path if we knew what we know now but that is a mute point. WHEREDIDGO: I aknowledge what you say and I appreciate it deeply, HEP93 and Connie and Teresa..thank you all. I am going to beat this thing and I am not going to let my chance go by cause of fear of being sick which is nothing compared to the endstage anyways..God bless all of you, sincerely, Alan

Hi Alan, it seems like you have gone in the right direction by looking into your options. It is true that the treatment can be very hard on some people but it is also true that the younger you are when you go on it the better you handle it and the more success you have with it. The best weapon against any disease or condition is to educate yourself. Doctors are great but like someone said here GP's are just what they are called.. general practicianers (sorry about my bad spelling) they know general information about a wide variety of conditions. They are a good place to start but forsure you should see a specailist. As for the depression issues your doctor is correct that there is a high rate of suicide and the treatments can cause or increase depression but this can also be treated. You should find a good psych-doc if you do not already have one, perferably one that has knowledge of the issues people going through Hep treaments can face, I would ask the specailist to refer you to someone if they can. I am sure you must be overwhelmed by all of this and face some difficult days ahead of you, but remember your on the right road and every moment you take now to deal with it is going to make your prognosis more favorable. Even if its as simple as getting on a good diet high in protean, getting extra rest when able, and de-stressing as much as possible. These things in themselves can be powerful treatments for your mind and body. Be proactive about your health and make the best choices you can and it will pay off in the end. I hope you find all the answers you are looking for and more and I wish you all the best of luck with your treatment, which ever way you decide to go with it.

Great attitude Alan, that is going to get you through this more then anything we could possibly tell you. Good luck

Alan, have you seen a hepatologist yet? I had surgery to remove the rt. lobe of my liver on May 15th, due to liver cancer. I was told that they got all the cancer. However, a biopsy of the left lobe revealed cirrhosis. This was news to me. When I was diagnosed with chronic active hep C, there was no cirrhosis. I have a post-surgical follow-up visit next week with the liver surgeon and P.A., to see what is available to me. I know the P.A. mentioned possibly becoming a transplant candidate. I read in the past that treatment for hep C is not available for those with cirrhosis. I've also read the opposite.

This was a very difficult surgery. Postoperative pain is rough. I'm also continuing to drain quite a bit. The drain was removed yesterday, which seems to have been too early. The surgeon saw me this morning and said everything looks great. The P.A. said my blood work is "perfect." I can't believe that my liver enzymes are normal, but I forgot to ask.

I expected to go to a skilled nursing facility for several weeks, but felt I didn't need it. The hospital PT said there was nothing they could teach me, as I was walking the equivalent of 1 1/2 blocks. I really feel better being at home, in my own bed.

Hugs to all,
Connie

Post Edited (hep93) : 5/22/2007 11:02:45 PM (GMT-6)

Have you talked to your school to see what support they can offer you? Often they are very understanding of health issues and will give you some leaniance, prehaps even finding you some help to continue with your studies from home when needed etc, excusing the odd late paper. As well you could talk to the people who are granting your scholarships and the loans people, they do have allowances for illness. You might need to have some doc's letters but it could be worth it if it becomes an issue. Just a thought.

Anyway wanted to say have a ton of fun in Europe!!!!! (is so jealous) I hope what ever the reason your going there for gives you some time to enjoy and relax!

Boulonman/Alan, hep93 and Connie are one and the same. ;)
Connie