Need Some Basic Information

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joey25
Regular Member


Date Joined Dec 2015
Total Posts : 25
   Posted 7/2/2016 7:56 AM (GMT -7)   
Someone may recognize me as the guy with an HIV phobia from that forum. Fortunately, I have not been exposed to that virus- I only imagine that I was.
HCV is another matter though as I first knew I tested positive eight years ago. My guess is that I got it from tattoos, and if that is true, it would put me at the thirty year mark. As I work in China and have to have med checks quite often, it's always a worrisome issue, but my liver function is always normal (my last AST was 20 and my ALT was 24). I suppose I just figured that my body 'beat' the virus when I was infected, but I'm getting a lot of confusing information from the web. If the virus were 'slowly' causing damage over several decades, wouldn't my levels be elevated, even slightly?
I would really like to clearer information on this. I know I can have an RNA test and should probably do that. For starters...
Thanks!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1114
   Posted 7/2/2016 10:28 AM (GMT -7)   
hi joey,
chronic hepititis is a slow moving disease(in most cases). it took me 40 years to progress to cirrhosis. i used drugs and alcohol for 30 years, before the anti body test became available in the early 90s(hep c test). at that point in time, i quit drinking and followed a semi healthy lifestyle(good food and exercise). Acute hep, and AIH can progress very quickly. Nothing in medicine is 100%...

the bodies immune response to hep c can destroy the virus in 15 to 20% of infections...you will always test positive for hep c antibodies, but need a pcr rna to confirm a chronic course. Your dr should ALWAYS follow up a + anti body titer, with a pcr rna.

there are no drs here, just years and years of experience, in a very serious disorder that can lead to cancer, transplant, and death. I/we welcome all questions. if im not clear, please question me. accuracy of information means eveything when dealing with sterssed out posters..

joey25
Regular Member


Date Joined Dec 2015
Total Posts : 25
   Posted 7/2/2016 7:39 PM (GMT -7)   
Thanks ppm guy.
Well, I just (finally!) found this U.S. veterans' site that gave me info on AST and ALT and how they can be 'normal' even when the liver is damaged.
http://www.hepatitis.va.gov/patient/hcv/diagnosis/labtests-AST.asp
http://www.hepatitis.va.gov/patient/hcv/diagnosis/labtests-ALT.asp
It's still unclear to me how quickly one's health can go down after decades of having the virus with no symptoms. Are we talking weeks? months? a year or two?

Obviously the next step for me now is to get a pcr rna and see what that reveals. It's odd how no doctor has ever ordered that test for me despite having tested positive (in various countries) at least ten times by now.

Thank you for your answer.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1114
   Posted 7/2/2016 8:29 PM (GMT -7)   
hey Joey,
when you responded to the other post, we were discussing cirrhosis. that said, liver disease has a damage scale of level 1 thru 4(metavir scale). in level 1 and 2, i will agree that you can have normal bloodwork..if you are alcohol free and eat a healthy diet. the earmarks of level 3 is bridging fibrosis and many septa, surrounding the portal vein. in time this restricts blood flow to the liver.

because liver disease can be asymptomatic until cirrhosis, incidental bloodwork usually catches it. it took me 30 years with no symptoms, and drinking heavily to find it. it was found on a routine physical
best to you

joey25
Regular Member


Date Joined Dec 2015
Total Posts : 25
   Posted 7/2/2016 9:00 PM (GMT -7)   
I drink no alcohol whatsoever and eat tons of fruits and veggies every day. But I was a heavy drinker in my 20's and 30's. Obviously, when facing this any of us are bound to have a lot of concerns. But my most practical one is that in general I need to pass a medical exam every year in order to stay here in China. Having HCV+ seems to be OK, but I don't know if crrhosis and HCV would. I know that's not something of concern for other people here, but...

Having already admitted to having disease phobia, I don't want to go down that road on these forums- just take things one at a time, see what info I can get from an rna test is next. Of course I don't want to think about the end stages of hepatitis. Or cancer. Or Chron's disease. Or any of these other 'possible' but not here today conditions.

I would like to as pragmatic as possible. Why I am here is this: what you are telling me is relevant, helpful, and makes sense. When I go on the Internet I can't make heads or tails of the info I get. It's mostly very scary. I want knowledge, and little by little I hope to share my experiences as well.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4803
   Posted 7/3/2016 9:45 AM (GMT -7)   
joey,

I wrote a long post yesterday that the GREAT Internet Ghost zoomed off somewhere before I sent it! UGH.

A couple of answers for you: My partner, Mike, was infected with Hep C in 1969 or 1970, but laid off the drugs soon after, and WAY before his diagnosis. For years he was fine. A daily drinker from teen times until 2010...so about 50 years...it was the booze that made things worse. In 2003 he did the Interferon/Ribavirin treatment and was sick sick sick for months. And his affect was angry, rageful, nasty....so not only was HE ill, but the rest of us were in a tizzy. I never found this site until years later.

After treatment he went to Mt Sinai in NY to meet with a hepatologist in a transplant department. She looked at Mike's liver biopsy slides and determined he did have cirrhosis, but if he quit drinking, he likely had 15 years before he would get "in trouble."

He was sober a year, felt good, and said what the heck, everybody dies...might as well die happy. So...he moved his expiration date up to 2010. We had moved to Florida where he didn't have to deal with the winters and all that plowing and freezing because he was just not up to it.

He found a doc in Miami who had recently moved from Mt. Sinai's transplant area to U Miami/Jackson Transplant. He told Mike he was very ill, that he should put his affairs in order because he had 3 months max...IF HE CONTINUED TO DRINK. Mike quit that very day but was so ill we did not think he would make it anyway.

His MELD score was 26 that day...OVER the transplant criteria for TP in Miami, but he was still drinking, half dead, but still drinking. The rules in the US do not allow transplant until a patient has 6 months of documented sobriety (AA or counseling) and a letter from a psychiatrist that they are unlikely to relapse. No sense in giving a donor liver and having it wasted is UNOS theory. Mike was very ill, but made it the 6 months and got transplanted in 2011. And he still had Hep C. He was cured in 2014, but had that virus inside him for the first 3 years, and that is a risk for his new liver.

Bottom line. Liver disease takes a long time. You can live a long time with cirrhosis...and end stage liver disease is really bad. ppm guy is right...no drinking, healthy diet (veggies, fruits, avoid too much red meat). AND for fatty liver, low carbs. Control sodium...ha ha...in China I would expect lots of sauces are salty...so good luck with that.

Let us hear from you,

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

joey25
Regular Member


Date Joined Dec 2015
Total Posts : 25
   Posted 7/3/2016 10:38 AM (GMT -7)   
Thank you very much for sharing that with me Mama Lama. My daughter is a big fan/listener of the Dalai Lama if there's any connection!

I used to be a heavy drinker- in fact, it was because of slightly elevated liver enzyme levels that a doctor did a Hep test on me when I was in detox and let the HCV cat out of the bag as it were- but frankly I didn't care much about life at that point. A year later I got sober (seven years ago) and my life is completely different now, greater than I could have ever imagined. I must stress though that while I was a heavy drinker for many years, my acute alcoholism (if you want to call it that- really gulping the stuff like no tomorrow) lasted for about two.

Anyway, I was too busy putting my life back together after I got sober to be planning ahead on HCV. I didn't really understand it and the doctor in detox didn't really elaborate on what I should do besides saying, 'now you have a really good reason to stop drinking!'

Then, five years ago, about two years after sobriety, I had a chance to work in China but needed a med check. I knew HCV could be an issue but my liver had returned to normal (my ALT/AST readings were never that highly elevated anyway) and I had no problems getting a visa. I also have an aunt who is now 80 years old and has had HCV from who knows when but has never gotten sick (at least not from hepatitis). I know a little about HBV (at least I think I do) and from my understanding most people 'pass' the virus and become non-contagious. In any case, HBV is epidemic here in China, and there is a great deal of HCV as well. I assumed that C was like B, and since my liver shows no abnormal blood readings re enzymes, that I must have 'passed' the virus as well. Now it seems like I know very little about HCV. However, I will get further blood tests and see what I should do next. It's my intention to work here as long as possible (I'm a linguist/translator in case anyone is wondering), and being very ill could cut that short in no time. The government doesn't want the burden of sending the deceased back to their countries (sorry if that sounds offensive to anyone- it's just the way it is). So I'm pretty sure I'd be denied a visa of a med check showed signs of illness (it's pretty much just the blood check). My employer could also revoke my visa if I were sick for too long. But these sound like a lot of things to obsess and over-worry about, from what I'm hearing.

So all this is just beginning for me though. But I wanted to ask how much the alcohol played a role in the cirrhosis as opposed to the virus. You quoted several doctors as saying that he had a good chance if 'he just quit drinking.' So do you think his problem was mainly alcoholic cirrhosis rather than cirrhosis brought on by HCV? What I mean to infer is that it seems to me that alcohol is far harder on the liver than HCV. Would that be inaccurate to say (in most cases)? I'm pretty good at not letting HCV scare me, but the thought of an acute, sudden attack rather than a slow, gradual decline is unnerving I admit. But I suppose everyone is different, right? I'm not the type of person who is passionate about living as long as he or she possibly can no matter what. To me survival is an ends to starting life again, not a virtue and not a quality life. There are some things I still want to do in this world- I want to help my daughter get through college for instance. I believe the quality of today is always more important than the musings of fears about tomorrow. However, just like all human beings, I fear, and I don't want to end up on a sick bed either. I have a lot of compassion for those of us suffering illnesses, I really do, but the way I've lived life I think I've burdened loved ones enough already. Now that I'm finally providing for others in a good way I'd hate to suddenly get very ill and end up back in the States doing God knows what. I'd like to help people.

I didn't intend to write such a long post. I know next to nothing about HCV and I want to learn. But I do hope I was able to contribute to this thread by telling how being HCV+ is now affecting me. For years now, I've been in denial about it and now I'm finally starting to face it and find out what I can do about it.

By the way food here is actually great, not like you'd expect- certainly not salty. Hygiene can be a problem though (or maybe just critters I'm not used to). Hep A seems a thing of the past thankfully. Usually I cook my own food with veggies from the farmers' market.

Thanks!

Post Edited (joey25) : 7/3/2016 11:42:10 AM (GMT-6)


MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4803
   Posted 7/3/2016 2:27 PM (GMT -7)   
joey, check out the Resources folder above...lots of good info.

hugs,

mamalama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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