Routine Health Check Threw Hep C at Me

Hi,

Last week I went for a routine healthcheck. Saturday I went in to see the doc with my wife to get the results and wham, he said I have Hep C. I have no idea where this has come from! I just want to close my eyes and make it go away. But I can't. I don't know what to do. I haven't eaten, I haven't slept, I haven't really been myself. My wife is very concerned and I don't know how to reasssure myself or my wife.

I am 38 (and male).

Basically the doctor said all my liver functions were fine. That was it and then he said "oh, by the way you have Hep C." Of course I nearly fell out of my chair. I know its serious. He then tried to reassure me saying that my liver still seems to be functioning normally and schedule and appointment with a specialist today (Monday).

I have no idea where this came from. I feel very confused and alone, and I never ever feel that way. Any advice would be greatly appreciated. I have already read tons of information and learned that I may never be free of this. Even if I get treatment (no insurance severely limits that option) and of course I am scared, very very scared.

I had planned on living a long life with my wife and hopefully our children one day. Now I can't even see tomorrow.

Anyway, any help or support is appreciated.

[annieCinMD]

Don't worry! The majority of people with hep C have little or no damage and live normal lives. It is a very slow acting disease in most people. Your doctor will probably do a biopsy to evaluate any damage you might have. That should ease your fears. I had it, and may still (I just completed treatment), for over 20 years with very little damage. You are not in imminent danger of dying! There are some very promising new drugs in trials now, and will be available outside of trials as early as 2011. You could also find a trial to participate in. That's what I did. Good luck!

[kickboxingmom]

I'm sorry your dr. was so blunt.Sure we understand the feeling you are feeling and it's hard.When dr told me I looked at my husband and said, I've only been with you.I was confused, hurt and wanted to crawl in a hole.Once you read, read, and read some more you'll start thinking where did I get this.Stop.Breathe.Where did you get it ? Who cares.You have it and now have to find out about it and find out how far it's progressed and take it from there.You did come to the right place for answers, opinions and knowledge.Tell your wife hep A = from food, Hep B=Sex,HepC=Blood on Blood.Now you'll take different test to find out type of HCV you have and the golden rule around here is to have a liver biopsy to find out the grade and stage of liver function or disease.It will take time for all of this new diagnosis to sink in.The more you read the more you'll know, the more you know the more knowledge you'll have, the more knowledge you'll be able to throw at the doctor's.Knowledge is Power.As you go through everything keep records.Get copies of everything.Keep a log.That way when you need to know something, you'll have it.You have to be your own advocate.You can do this.You have to.Again, I'm sorry you had to get this news and there is help out here.Don't be shy and people on this forum are amazing and smart and will help you in any way they can.Nice to meet you.Please let us know how you are doing.                Tammy

[kickboxingmom]

annieCinMD, your words were nice ! Also wanted to add.Most drs. say your more likely to die with it not because of it.It will be ok.You'll see,

[HCA]

How does the doctor know you have Hep C ?
If it was just a routine health check you will have been tested for antibodies only.
This could mean that you were once exposed to Hep C and cleared it,or it may be a false positive.
The specialist will test for active virus-only if that is positive do you have Hep C.

[VeryConfused990]

Hi,

I just got back from the specialist. He said my liver function is normal and I do not have to have any treatment yet. He is also doing a second test to confirm if I have it or not and also a viral load test. I will go back in two weeks to see if I have it but I have had the symptoms (e.g. sore abdomen) which is what prompted the health check.

I am sorry to hear about your diagnoses and I am encouraged you have found some measure of peace with it. I hope I can too some day. My wife and I want to have children but the doctor said to me we have to use condoms now for sex so I am not sure if we can ever start a family.

The doctor was encouraging about the treatment though and said if I do need treatment, once I had met certain guidelines the local government health insurance would pay for it.

You are right KickboxingMom, I dont know where this came from. But I must focus on the future. Although right now I just want to roll up in a ball and sleep for a very long time. It is still very surreal. Sometimes I cannot believe it and sometimes it just terrifies me.

The specialist didn't say I needed a biopsy. Should I ask him for one? I think I did but he kind of ignored my request. I cant remember. It was all very blurred.

Anyway, thanks for your help and if you can provide me with any other information I would appreciate it.

Thanks
Confused.

[HCA]

You and wife don't have to use a condom-the doctor is talking rubbish.
You cannot conceive a baby whilst you are taking anti-viral drugs.
Do your own resarch on sex and hepatitis c-it is not an STD and sexual transmission between monogamous heterosexual couples is virtually non-existent

[Isobella]

So many of us have been where you are now.  It is heartbreaking, but you will get through it.  As stated above..knowledge is power.  The more you learn, the better you will be able to make decisions and choices.

It seems the worst part in the beginning is the waiting.  Now you are waiting for a definite answer on your viral load.  Hopefully it will show you only have antibodies and cleared the disease on your own.  If not...you will have the numbers necessary to move forward in the process.

If it turns out you do have HVC--Absolutely get a biopsy. There is no other clear way to determine liver damage.  (unless there is a fibroscan available near you)  It is a quick procedure that will give you concrete information that will be necessary in making a decision to treat or not.

I also had some tenderness in the abdominal area prior to tx.  But my biopsy showed 1/0, which is very good.  I decided to tx now because there was a promising trial in my area and I could tx for free. My point is...don't let that tenderness freak you...it doesn't automatically mean damage.

Use the time you have waiting for results by reading as much as possible here on the forum.  We are not docs, only patients that have been through the same thing.  Some of us many times, some of us respond, others don't. Regardless of our stories, I am sure you will find comfort and knowledge here.

As far as the cost, there are many programs that can help cover the cost of the meds.  There are also many promising trials for new drugs coming up.  In trials, you get your meds for free and are followed very closely.  I have been very pleased with the care I received in my Vertex trial Before making a decision--do lots of research and ask lots of questions.  Many here have insight into trials-both good and bad.  

I think Doc #1 was totally uncool in the way he handled giving you these results.  You will find that the ignorance in the medical field regarding HCV can be surprising.  But you will also find very knowledgable docs and nurses..  Just don't be afraid to dump the bad ones and keep looking for good ones.  

Wishing you and your wife the best,

Isobella

[nygirl7]

I still am not sure you even have HepC - this would involve taking some specific tests after finding out you had the hepc antibodies....and that itself is not something that they generally even test for out of no where, especially at a routine health exam.  Most of us find out by accident when our liver function enzymes are through the roof but they don't just "test for hepC" at normal appointments (although they sure should).

I think you should indeed keep following up with this second opinion and find out if you do have the disease or not.  I can't really even imagine what test you just had at the specialists to determine how much liver damage you have or don't have?

Youd know if you had a biopsy and that would be the way to determine if you really need to start treatment right away or not and how much liver damage you have.  Enzyme levels and blood tests can't do that.

I think its a good thing you got away from the first doctor because things just don't seem to be adding up to me at all and well if you don't have the disease you are really putting the cart in front of the horse so to speak.

You could be just fine.

As for liver tenderness that means nothing as the liver has no nerves in it to feel pain and  to be truthful  I poked  myself so many times to see if it had pain (when i was first diagnosed) I'm surprised I didn't bruise it to death - no wonder my side hurt!

Good luck hope you don't have it at all.

[tashka]

Please, don't worry about using condoms. My husband has hepatitis C for 27 years, and we learned only 2 years ago about the diagnosis. We have a daughter, and I am negative for the disease. It is sad that the doctor gives such drastic recommendations that have no basis in reality.
As others above have said, there is no telling if you even have hepatitis C until you get PCR test. I don't understand why your doctor discusses treatment without confirmed diagnosis. Maybe you should look for another one.

[VeryConfused990]

As I have currently just found out there is no treatment going on. The doctor wont even discuss it so if we wanted to conceive a baby we could do so now.

Both the first doctor and the second doctor said condoms must be used. I also read this is not an STD and in the US the FDA does not recommend changing sexual habits if a person is Hep C positive. But all I have to go on is what the docs are saying and I do not in anyway ever want to endanger my wife.

I will take what you have said and show my wife and we will have to make an informed decision about this. It is just really a lot to take in right now.

Thanks for your input and insight.
Confused.

[VeryConfused990]

Hi Isobella

=======
So many of us have been where you are now.  It is heartbreaking, but you will get through it.  As stated above..knowledge is power.  The more you learn, the better you will be able to make decisions and choices.
=======

Thak you for your kind words and encouragement. I do appreciate it. I am still really afraid though and honestly don't know where to turn or look. I will try to learn more but don't even know where to start.

=======
It seems the worst part in the beginning is the waiting.  Now you are waiting for a definite answer on your viral load.  Hopefully it will show you only have antibodies and cleared the disease on your own.  If not...you will have the numbers necessary to move forward in the process.
=======

I am hoping it is negative and that I do not have this disease. I had the two tests last night and now will see the doctor again on Monday in two weeks. To be honest,  I also don't like this doctor. But we will see how it goes next time.

======
If it turns out you do have HVC--Absolutely get a biopsy. There is no other clear way to determine liver damage.  (unless there is a fibroscan available near you)  It is a quick procedure that will give you concrete information that will be necessary in making a decision to treat or not.
======

OK. I will insist. I might have to pay for it out of pocket though and it may be very expensive. I will do it anyway.

======
I also had some tenderness in the abdominal area prior to tx.  But my biopsy showed 1/0, which is very good.  I decided to tx now because there was a promising trial in my area and I could tx for free. My point is...don't let that tenderness freak you...it doesn't automatically mean damage.
======

OK. I will try not to let it freak me out. Although it is very concerning and troubling. I have been a pretty fit and healthy person my whole life. Never spent a night in hospital and now I may have this disease.

======
Use the time you have waiting for results by reading as much as possible here on the forum.  We are not docs, only patients that have been through the same thing.  Some of us many times, some of us respond, others don't. Regardless of our stories, I am sure you will find comfort and knowledge here.
======

Thank you. I have already started reading as much as I can when I have the time and inclination.

======
As far as the cost, there are many programs that can help cover the cost of the meds.  There are also many promising trials for new drugs coming up.  In trials, you get your meds for free and are followed very closely.  I have been very pleased with the care I received in my Vertex trial Before making a decision--do lots of research and ask lots of questions.  Many here have insight into trials-both good and bad.  
======

I live in Taiwan. I don't know if they do trials here. I will ask my doctor next time I see him. I am glad your trial went well and I do hope it worked out for you. As for covering medical costs, here in Taiwan they have national health insurance. The doctor said if the GL level (whatever that is) in the live exceeds twice the normal amount and remains that way for three months then the NHS will cover the cost. That sounds a bit late to me though but I am new to this and have to learn more.

======
I think Doc #1 was totally uncool in the way he handled giving you these results.  You will find that the ignorance in the medical field regarding HCV can be surprising.  But you will also find very knowledgable docs and nurses..  Just don't be afraid to dump the bad ones and keep looking for good ones.  
======

OK. I will do that. My wife has already suggested we go look for someone else.Even doc 2 wasn't that great. I spoke to him and tried to ask him questions and then he told me to stop being nervous and actually wrote on the report "patient appears agitated and nervous." I dont know what these guys expect me to be doing. Dancing in the streets and having parties? I don't know. Of course I am nervous.

=======
Wishing you and your wife the best,
=======

Thanks. And to you too.
Confused.

[VeryConfused990]

Hi

===============
I still am not sure you even have HepC - this would involve taking some specific tests after finding out you had the hepc antibodies....and that itself is not something that they generally even test for out of no where, especially at a routine health exam.  Most of us find out by accident when our liver function enzymes are through the roof but they don't just "test for hepC" at normal appointments (although they sure should).
===============

Here in Taiwan they do tests for Hep A, B and C on the health test. We did it in a private hospital. I checked with the doctor last night and he said it was an antibody test. That is as much as I know. He said it might (very unlikely) be a false positive and I had more blood drawn for another test and also a viral load test.


===============
I think you should indeed keep following up with this second opinion and find out if you do have the disease or not.  I can't really even imagine what test you just had at the specialists to determine how much liver damage you have or don't have?
===============

I haven't had any tests for liver damage. I will check with the specialist next time. If the test confirms it is Hep C I will ask him what tests I must take. Thank you for your suggestion.

===============
Youd know if you had a biopsy and that would be the way to determine if you really need to start treatment right away or not and how much liver damage you have.  Enzyme levels and blood tests can't do that.
===============

I didn't have a biopsy and the doctor said all my liver functions were fine. I do not know what tests they were.

===============
I think its a good thing you got away from the first doctor because things just don't seem to be adding up to me at all and well if you don't have the disease you are really putting the cart in front of the horse so to speak.
===============

I see. Well I hope I am and I hope I don't have this disease. It is very sudden and I am very very afraid.

===============
You could be just fine.
===============

I am hoping

===============
As for liver tenderness that means nothing as the liver has no nerves in it to feel pain and  to be truthful  I poked  myself so many times to see if it had pain (when i was first diagnosed) I'm surprised I didn't bruise it to death - no wonder my side hurt!
===============

I see. But I don't prod by chest at all. I have had this throbbing pain in my abdoment on and off for the past 6 months which is why I wanted to have a  health checkup. Hopefully its nothing. I will wait and see.

Thank you for your response.


===============
Good luck hope you don't have it at all.
===============

Thanks. Me to and good luck to you.
Confused.

[VeryConfused990]

Hi Tashka

Thank you for your kind word and encouragement. I am glad to hear your husband has lived a long and full life with this disease and I do hope he gets well. I will hope and pray that my wife and I can have the same. I agree it is sad that doctors give this kind of advice but we will have to make our own decision in the end.

=========
As others above have said, there is no telling if you even have hepatitis C until you get PCR test. I don't understand why your doctor discusses treatment without confirmed diagnosis. Maybe you should look for another one.
=========

I was the one pushing for a discussion of treatment. Not him. He didn't want to talk about it. I did. He did want to get the confirmation you have referred to and I took the tests and now will go back in two weeks to find out if I have this disease or not. I hope I dont but if I do I will be very afraid.

Thanks for your input, encouragement and support
Much appreciated
Confused.

[Bill1954]

You are going through the same emotions that most of us do when first diagnosed. Try to relax; but this is easier said than done, I know.

If you like, read this site for more information on Hep C (HCV):

http://janis7hepc.com/have_you_been_just_diagnosed.htm

Also, read any item of interest in the section ‘other HCV information’ in the right-hand side. Be sure to bookmark this page for future reference. If you read all this, maybe you won't be so 'VeryConfused' :o).

You might also like to review this website for new updates on the disease; if you like, you can have them send newsletters twice weekly to your email inbox:

http://www.hivandhepatitis.com/hep_c.html

Good luck with the follow up test results—

Bill

[johnma]

Veryconfused,
People on here have had hcv for decades.  There is much reason for optimism and, even if you do have it, it is very likely they will have a cure long before it does any damage.  As far as sexual transmission goes, I have read most studies on this - at least those translated into english and followed the de-politicizing of  this issue under the former head of cdc.  I also consulted with a very prominent hepatologist on this along with a former girlfriend.  bottom line is that it doesn't happen - sexual transmission.  Can't say it is imposible but it is exceedingly rare if it is actually possible at all.  It isn't an std.  Period.  The doctors that are telling you to use condoms are just wrong.  Are they hepatologists specializing in hcv?  First clown I saw was gastroenterologist who told me not to kiss my year old son on the lips!

Just remember - not that many years ago, they wouln't have even known what was causing elevated liver enzymes.    





  

[Isobella]

I'm sorry that I just assumed that you were in the US when I was talking about trials.  But that leads to another point that I don't remember being mentioned above.  When you get your results from this PCR, they will also give you a genotype.  

Loosely speaking, that is the strain of the virus that you have.  Here in the US, the majority of us are geno 1a or 1b.  It is often the hardest to treat, altho with the new drugs, many of us are doing well.

I am not sure what the most common genotype in your part of the world is....but that is something you for sure will need to know.  If I guessed, I would say geno 3.....but hopefully someone will chime in with more info.  Maybe search the archives or google it.  Typically geno 3's tx for only 24 weeks, so that is good news.  

Bottom line.....make sure you get the viral load results AND the genotype.  

But, like NYgirl said above....no one is really sure yet if you even have HCV yet.  We're still hoping you only have the antibodies.

One day at a time, friend. Hang in there.

Please keep us posted on your progress.

Isobella

[VeryConfused990]

Thanks for your kind words. I appreciate them. I have looked at the website links you sent. I will read through the sites and see what information can be learned there. I am hoping not to be confused but I am. I am confused, scared and nervous.

My life has completely flipped around to be honest. I am not focussing at work, I am not eating, I am sleeping 10 - 12 hours a day. My wife is being very supportive but I have to pull myself up. Only I can do that but I really don't know how I can do that. If it continues I will have to seek counselling I think.

Anyway, thanks for the links. I will take a look.

Confused.

[Bill1954]

It appears that genotype 1b and 6 are the predominant strains in Taiwan:

http://www.springerlink.com/content/w5m2628630431j15/

There are clinical trials frequently held in Taiwan, too:

http://clinicaltrials.gov/ct2/results?term=hcv+AND+taipei

Bill

[VeryConfused990]

Hi John

============
People on here have had hcv for decades.  There is much reason for optimism and, even if you do have it, it is very likely they will have a cure long before it does any damage.
============

I have been trying to read up about new treatments but it is a lot to take in. I don't know how much liver damage there is but if treatment is an option I will take it ASAP.


=====================
As far as sexual transmission goes, I have read most studies on this - at least those translated into english and followed the de-politicizing of  this issue under the former head of cdc.  I also consulted with a very prominent hepatologist on this along with a former girlfriend.  bottom line is that it doesn't happen - sexual transmission.  Can't say it is imposible but it is exceedingly rare if it is actually possible at all.  It isn't an std.  Period.  The doctors that are telling you to use condoms are just wrong.  Are they hepatologists specializing in hcv?  First clown I saw was gastroenterologist who told me not to kiss my year old son on the lips!
=====================

Thank you for this. I will speak to my wife about it but she must be comfortable too.

Thanks a lot for your kind words. And I hope you are well.
Confused.

[VeryConfused990]

I believe the most common strain in Taiwan maybe 1b. I hope if I have 1b I can get access to those drugs. I just don't want to delay treatment if its available.

I am trying to hang in there and I am hoping it is negative. So far I am sleeping way too much and not eating and I am very distracted at work.  I don't really know where to go with this.

Thanks for your kind words.
Confused.

[Isobella]

Some general tips that worked to help me get through those initial days after being diagnosed and waiting for my PCR results were:

taking 1/2 of a  .25 Zanax for anxiety...not often, but just when the anxiety kicked in.

deciding that IF I had this disease, I was going to go into tx strong, so I changed my diet, increased my work outs and added some liver friendly supplements

Those were the main things I did that made me feel I was being proactive and meeting this thing on my terms.  That feeling of the world being turned upside down on you is normal....but do what you can to regain control.

This is not a death sentence.  So many diseases are much worse than this. HepC simply raises the CHANCES that you will progress onto cirrhosis or cancer.  Fight the odds.  Own it.  Own it and decide to beat the krap out of it.  

That's the way of thinking that worked for me.  Attitude won't cure HCV...but that and humor will help get you through the days ahead.

[VeryConfused990]

Thank you so much for your kind words and encouragement.

I want to regain control but honestly have no idea how. I don't have access to drugs like zanax and I am not used to being fearful or anxious so all these emotions are new and unexplored. I usually am very decisive and in control.

As for diet I honestly have no idea what I should be eating. My wife is trying to read some books on this now but I really dont know what to eat. I do appreciate being proactive but the doctor also said I cannot have treatment at will. I have to wait for him to prescribe the treatment.

I hear you about owning it and fighting it but it does feel like a death sentence and I am sad that this is now in my life and the life of my wife. This is going to change a lot of things for us and I am scared about that too.

Once again thanks for your encouragement.
Confused.

[johnma]

I hear you about owning it and fighting it but it does feel like a death sentence and I am sad that this is now in my life and the life of my wife. This is going to change a lot of things for us and I am scared about that too.


NO  Not true.  just focus on your life and your acctivities.  you are freaking out - it is the typical response, but it is because of the unknown.  I did the same thing and so do most people.  But you will be fine and this will very likely not change your life.  Just stay in the moment and put this on the back burner.  time is not of the essence here.    You don't have cancer.  Other people do.  Go out and have fun






































m

[VeryConfused990]

Hi John Ma

===================
NO  Not true.  just focus on your life and your acctivities.  you are freaking out - it is the typical response, but it is because of the unknown.  I did the same thing and so do most people.  But you will be fine and this will very likely not change your life.  Just stay in the moment and put this on the back burner.  time is not of the essence here.    You don't have cancer.  Other people do.  Go out and have fun
===================

Thank you for your feedback. I appreciate it. Just hard focusing right now. I haven't eaten anything for a few days so feel very weak. I am afraid of this. Very afraid. I hope it doesnt change my life and I will try to take your advice, but that right now seems difficult to do.

Thanks for your encouragement.
Confused.

[Bill1954]

As you learn more about this disease, you will begin to understand that there is generally very little urgency involved in its management. As johnma suggests, try to relax; maybe transforming anxious energy into education is a good idea?

Not all of us enter into treatment immediately; your doctor’s hesitance to prescribe treatment drugs is probably based on science/medical necessity rather than emotional response. Many of us adopt a ‘watch and wait’ approach to this disease; it is often in our best interest to postpone treatment until certain conditions are met. These conditions include advanced liver disease; with little scarring/fibrosis, the risk/benefit analysis might not be there. These treatment drugs can be challenging to some; they are similar in some respects to cancer chemotherapy, and should not be taken needlessly.

A biopsy is always an optional procedure. If you and your doctor decide to postpone treatment a biopsy might be prudent; if you elect to undergo treatment anyway, a good case could be made to skip the biopsy; it is an invasive procedure with some degree of inherent risk.

Remember that you are not alone; many, many people have walked this path, and most of us are here to talk about it. If you feel your knowledge of this disease is threatening your peace, it might be prudent to ask for psychological counseling. This is understandable; you are dealing with situational anxiety, and it won’t last long.

Best to you and good luck with the confirmatory PCR results—

Bill

[newleaf09]

Your reaction is normal; I felt the same way.  Try to hold on until you get further results to confirm the disease.  If it's confirmed, know that how you got it is completely irrelevant and then learn all you can about the disease and treatment options and make plans to deal with it in an appropriate way.  Your physician will guide you.  I don't know how people deal with the anxiety involved in the initial diagnosis phase.  I was pretty freaked out and remained that way until I started treatment and got the first negative PCR test back.  Hang in there.

[VeryConfused990]

Hi Bill.

===================
As you learn more about this disease, you will begin to understand that there is generally very little urgency involved in its management. As johnma suggests, try to relax; maybe transforming anxious energy into education is a good idea?
===================

I hope I am able to do that. My wife has been very very supportive and we have already tried to effect change with our diet and lifestyle. I have told two close friends and they have been supportive to as has my wife's family. My friends have told me they will watch for signs of anxiety and stress and give me a kick to make sure I don't feel too sorry for myself. Its probably what I need.

===================
Not all of us enter into treatment immediately; your doctor’s hesitance to prescribe treatment drugs is probably based on science/medical necessity rather than emotional response. Many of us adopt a ‘watch and wait’ approach to this disease; it is often in our best interest to postpone treatment until certain conditions are met. These conditions include advanced liver disease; with little scarring/fibrosis, the risk/benefit analysis might not be there. These treatment drugs can be challenging to some; they are similar in some respects to cancer chemotherapy, and should not be taken eedlessly.
===================

I understand this. For myself I want the treatment ASAP and I want to get rid of it and get it out of my system. I understand they are severe but I am prepared to try them to get rid of the virus if possible. As someone else posted, I don't have insurance and I saw you mentioned drug companies will be willing to provide the drugs for free. Would that apply to people in Taiwan (abroad) or only US based patients?


===================
A biopsy is always an optional procedure. If you and your doctor decide to postpone treatment a biopsy might be prudent; if you elect to undergo treatment anyway, a good case could be made to skip the biopsy; it is an invasive procedure with some degree of inherent risk.
===================

OK. I will speak to him about that. Thanks for the advice.

===================
Remember that you are not alone; many, many people have walked this path, and most of us are here to talk about it. If you feel your knowledge of this disease is threatening your peace, it might be prudent to ask for psychological counseling. This is understandable; you are dealing with situational anxiety, and it won’t last long.
===================

I already mentioned this to the doctor and he suggested before he recommends counseling we should wait on the confirmation tests. I realize this is going to take a lot of emotional energy from me and it is already affecting my work. My job is pretty serious and intense (analyst) and requires me to focus and pay attention. I don't disregard I may need counseling and not averse to that. I am also going to speak to my Pastor when he returns and try and build up a strong support network for my wife and myself.

I know I am not alone and my wife has said this happens for a reason. I do not know what reason but I understand that Hep B/C together are more prevalent than other diseases like HIV and cancer (at least according to world liver day website). I am glad to find a forum like this one to offer support. I am trying to eat more today.

By the way, can you recommend a website with what kind of foods etc. are good for the liver. I stopped drinking alcohol completely (coincedentally) 8 weeks ago for no reason. I just decided to quit (I wasn't a heavy drinker but did have the occasional drink on the weekend watching sports with mates). I realize I do need to eat right and so I am trying to find what foods and drinks I can take to maintain good liver function.

===========
Best to you and good luck with the confirmatory PCR results—
===========

Thank you for your support and help. I really hope it is negative.
Confused.

[VeryConfused990]

Hi NewLeaf

==========
Your reaction is normal; I felt the same way.  Try to hold on until you get further results to confirm the disease.  If it's confirmed, know that how you got it is completely irrelevant and then learn all you can about the disease and treatment options and make plans to deal with it in an appropriate way.  Your physician will guide you.  I don't know how people deal with the anxiety involved in the initial diagnosis phase.  I was pretty freaked out and remained that way until I started treatment and got the first negative PCR test back.  Hang in there.
==========

Thank you for your kind words. I never really expected this. Actually when I went to see the doc on Saturday to get my results I was in great spirits. I thought the usual (slightly overweight) feedback would come through but I never expected this. I hope I can persuade my doc to give me treatment but I don't think he will give it to me. We will see. I would prefer to treat than not to treat. We will see what happens.

I am still hoping for a negative RNA test. But if it is positive I will try to cary on from there.

Thanks for your kind words. They are much appreciated.
Confused.

[Rockerforlife]

http://janis7hepc.com/Nutrition/Nutrition.htm

[Rockerforlife]

http://janis7hepc.com/25%20Power%20Foods.htm

[Bill1954]

Hello again, Confused—

This link lists the clinical trials currently available in Taiwan for HCV:

http://clinicaltrials.gov/ct2/results?term=hcv+AND+taipei

The trials that are currently looking for patients are marked “RECRUITING” in the left hand margin. Each trial has different parameters and it maybe difficult to assess them with your current base of knowledge for this disease. However, if you are interested, you can ask your doctor for advice, or one of us in here may be able to guide you. You can also discuss the trial with a trial coordinator; they should be available for questions by telephone.

For instance, this trial is for genotype 1 patients and lists the telephone contact number in Taipei as:  Contact: Jia-Horng Kao, MD, PhD [phone] ext 7307 ***@****

http://clinicaltrials.gov/ct2/show/NCT00495131?term=hcv+AND+taipei&rank=1http://clinicaltrials.gov/ct2/show/NCT00495131?term=hcv+AND+taipei&rank=1

Again, good luck with the upcoming PCR test—

Bill

[cgarner36]

I understand your confusion and anxiousness.  I too am confused. My son had a high number come back on his first blood test, but today the viral load test came back and the doctor said it was "inactive". I'm still hoping that is a good thing and I think it is.
I have known several people that have had their first test come back a false positive. I truly mean several.  I also know several people who have the disease, one in particular who has had it for 42 years now.  (she has 2 kids, ages 24 and 22)
I know this is a scary time but think positive and try to remember that it is not a death sentence. That's what I kept thinking... over and over i thought "it could be worse, it really could"  
I still am a little anxious not knowing "for sure" what "inactive" really means but I know that there is so much support and help and information out there that everything will be ok, no matter what the outcome.  I am praying that it all works out for you.
I also want to say that I have a friend who was diagnosed about 16 years ago and she has 2 kids... ages 8 and 14.   Hope is not lost.

[Isobella]

When they do a PCR test, the results will either be a number showing the viral load or be undectable.

If there is a number, it means you have the virus.  If it is UND, that means you only have the antibodies...which means you are one of the lucky 20% that clear on their own. Having antibodies does NOT mean you have the virus-it only indicates exposure.  Having a detectable viral load means you do have the virus.

Get a copy of your son's results.  If you have any questions, press your doc harder on what he means by inactive....or post them here.

Good luck to you both.

[VeryConfused990]

Dear Rocker for Life

Thank you for the links. There is just so much to read and learn and right now I am in a daze. I have decided just to eat lots of fruit and vegetables for now. Cut down the red meat, eat more chicken and fish (not fried) and only drink water. I will also cut down on carbohydrates and probably just eat rice for now.

I hope that works as I can slowly start to digest my future and the things I need to eat.

Thanks for the links.
Much Appreciated.
Confused

[VeryConfused990]

Hi Bill,

Thanks for sending the links to the medical trials. I think I will wait for the confirmatory results and then I will speak to my doctor and also contact the people involved. What are my chances of kicking this virus on meds? What happens if I pull the placebo? I would rather just do the treatment. I saw elsewhere you said the treatment is about US$30k per year. I might be able to squeeze that out for one year but is it guaranteed? Also, do you think it would be better to wait for the new protease inhibitor drugs to come out in 2011? Do you think this would increase my chances of getting better?

I am still scared and think about this disease daily, 24 hours. I am only 38 and do not want to die young. I want to live a long life with my wife.

Thanks for your support and help. You seem to know a lot about this disease.

Thanks
Confused.

[VeryConfused990]

To C Garner

Thank you for your kind words and I am sorry to hear about your child. It is a very very scary process. My wife and I were planning to buy a house and to have children and all of a sudden the priorities of life have changed. I cannot even see tomorrow. For the first time in my life I am scared and I do not know how to rid myself of the fear.

I am encouraged to hear about your friend who has lived so long with the virus. I hope if treatment is not available then I can live that long too.

Thank you for your kind words and encouragement and I am still holding thumbs on the follow up tests.

Confused.

[Bill1954]

Hi not-so-confused :o),

The chances of eliminating the virus are dependent on many things; the most important of which is genotype. Without any protease inhibitors, genotype 1 patients will achieve Sustained Viral Response (SVR, or cure) about 45% of the time, on the first attempt. Genotype 2 and 3 achieve SVR in about 70 to 90 % first time treatment attempt. There are almost no cases of genotype 6 in the US; this is fairly prevalent in Taiwan though.

There is never any guarantee that treatment will be effective; particularly with genotype 1.

The new protease inhibitors are generally geared for genotype 1. They will initially be used in conjunction with interferon and ribavirin as part of a three-way cocktail. They will probably increase the efficacy of treatment for genotype 1 to roughly 70%; up from 45%.

They may also limit the exposure to the interferon significantly; some patients may only have to endure 24 weeks, rather than 48 weeks of treatment. These drugs are still in clinical trial, so these statistics might change, but these are the results as they appear today.

Again, if it was me, and I had little liver damage, I would opt to wait for two years for the new drugs. If I had significant damage per biopsy, I might indeed treat now.

I am sorry to hear this has had such a profound effect on you and your family.

All the best of luck to you--

Bill

[VeryConfused990]

Hi Bill

Once again thank you for the wealth of information and encouragement. I really do appreciate your input. I have started to eat more and trying to get myself back on track. It has just been a tremendous shock to me. I am someone who never ever gets sick. I was looking at myself in the mirror this morning and look 100% healthy. I never thought I would have this pathogen inside my body.

I suppose I am fortunate to find out that it is there and I am also fortunate that right now the specialist I spoke to is not too concerned as he said my liver is functioning normally and all my blood levels are normal (whatever that means). I am also lucky that my wife is being very supportive and encouraging and being very proactive in changing my diet and getting me to sleep more and excercise a bit.

But still there is this fear of the unknown, of what is about to happen. I am only 38 years old. I honestly don't want this disease to be the end of me.

There is just so much to learn and I am so overwhelmed. I will get my confirmatory test in a few weeks and let you know what it is. I will discuss the treatment options with the doc and if you dont mind I might ping you for some insight and advice too. You seem to know quite a bit.

Anyway,

Once again thank you for all your support.
Paul

[Jakied]

I have a feeling you were screened for the Hcv antibodies only.  There is

a good chance your 'reactive' screening test was a 'false pos.'  Do you

know what your signal to cutoff ratio number was on the screening test?

If it is below 3 or so, there is a good chance it is a 'false pos.'  You can

confirm this with a 'Riba' test.  Riba is VERY specific for HCV antibody

while the screening test is VERY sensitive for all antibodies, which is

the reason it may be a false pos.

Do this, find out what the signal is on the screening test, if below 3,

ask for a 'Riba' test.

One question if I may:  Do you have a risk factor for hcv in your past?

Most transmissions are from sharing needles for drug use or a blood

transfusion before 1991 or so.

Sexual transmission is possible but not likely.  Blood to blood is the

most efficient way to transmit.

[VeryConfused990]

Hi Jakie,

Yes, you are correct. It was a antibody test. I went to see a specialist last week Monday and insisted he do some follow up tests (including a viral RNA test). I will get the result next week Monday. How often do "false pos" occur? I really do hope it was a false positive. As for the ratio you mentioned I have no idea. I just don't know. But both doctors seemed convinced I have this disease so maybe the ratio was high. Who knows?

As for transmission risks. I cannot think of any. I was a medic in the South African military in 1990 and also helped at one or two accidents where my legs got covered in blood. That was a long time ago though. I am pretty sure though if I had it before it would have popped up somewhere along the line in the medical checks I have had recently. I did have minor surgery on my face earlier this year to remove a cyst and I have been to the dentist but although Taiwan is listed as a developing country their medical stuff is pretty much state of the art so it would be hard to believe I got it from there.

To be honest.I never get sick. I have never had major surgery and never spent as much as a night in hospital. When I look in the mirror I am about 10lbs overweight and apart from the folliculitis I suffer from I look in perfect health. I eat wellI excercise, I quit drinking coincedentally two months ago (but was only an occasional drinker, not excessive). To prove to myself I wasn't sick I did a very strenuous hike up a mountain today in +30C weather and was fine but I know I am sick.

I am very confused by all of this and very scared. I am hoping it was a false positive. But we will see.

Thanks for your feedback.
VeryConfused.
Thanks for your support.

[android323]

Hi Very Confused,

Hang in there and wait for confirmation and here is something I clung to when first diagnosed ...sometimes folks diagnosed with a chronic disease ironically end up living healthier lives than those who do not.   Take a breath ....so many new drugs in the pipelines .....it will all be okay either way .....Take care

Andrew

[oldhepper]

I can't add much more than what has already been written - except this: I've had HCV since 1965 and never been treated. I was married for 26 years and have two wonderful grown children, both of whom were conceived after 1965. Both children and the ex husband are negative for HCV.

It's just lately that I've begun having symptoms of the disease - major tiredness and weakness, lots of digestive problems, etc. but... I'm still much healthier than a lot of people my age (67).

The diagnosis of HCV in 2004 was life changing and my daughter says I aged 10 years right after learning of the chronic illness because of the FEAR and the STIGMA. Fortunately, I had already retired by the time I learned I was an "old hepper". I didn't need to inform work supervisors or co-workers. Plus, I had a decent insurance plan to help me financially through blood work, office visits and the biopsy. I'm Grade 2, Stage 1, btw, and geno 2b.

You've received a lot of excellent information from the other posters here and I hope my comment helps as well.

Best wishes to you.

[VeryConfused990]

Thank you very much for your encouraging words. They are much appreciated. It is now more than a week since the initial diagnoses and I am working through the emotions that everyone probably experiences at first. I have indeed taken a breath and started to eat much healthier (as you suggested) completely cut out fried foods (e.g. french fries and fried chicken) focus more on eating fresh fruit and vegetables and eat a lot of roasted chicken and fish. I have also cut out all caffiene (tea and coffee) and now only drink fruit juice or water. So yes, I have completely altered my diet which I think is now healthier. Hopefully I will be able to maintain this over the long run.

Once again thanks for your kind words of encouragement. They are much appreciated.
Confused.

[VeryConfused990]

Wow. You were infected in 1965, that is more than 40 years ago. It gives me a lot of hope and I certainly hope. I am also encouraged to hear that your children and ex are hep c negative. It does give me more hope that I can start a family. I am sorry to hear you are experiencing symptoms now and I do hope you can work with your doctors to allieviate them and help maintain the quality of your life.

As for my diagnoses, yes, I have lost 5kg (about 11lbs) in one week. Probably due to stress and the lack of appetite meaning I don't reallly eat. As for the stigma, I have already disclosed my status to my boss, some very close friends and my Pastor. They have all been incredibly supportive and helpful as I knew they would and they will be there in the long haul to help support my wife if I ever need to take medications.

Yes, you are right I have received a lot of useful information. I will go to the doctor next week to see if it was a false positive or if I do have the disease. I will take the next steps after that.

Thank you very very much for your encouraging message of hope. It helps a lot.
Confused

[Bill1954]

One thought to consider; what if your test results indicate that you don’t have HCV? Will you consider maintaining all these healthy changes or do you abandon them? In other words, what will you have learned from this experience? Food for thought...

Bill  

[VeryConfused990]

Hi Bill,

I am hoping beyond all hope that the test was a false positive.

IF, and that is a big IF, the result is negative for HCV, I will probably continue the way I am now. You are right, this has been a huge wakeup call for life and is a watershed in my life. I hope I can maintain the healthy habits I have picked up and certainly not take my good health for granted anymore. I honestly don't get sick and never have any health issues.

Here is hoping for a false postive. I will keep you posted.

Bill, once again thank you for your support. You have been a mountain and have been very encouraging to me.

Thank you.

[VeryConfused990]

Hi Everyone,

Been going back through my mind possible exposures to blood in my recent past. I recalled today about 7~8 months ago I helped someone involved in a motorcycle accident. The guy and his wife basically cartwheeled over the bike and had many grazes and open cuts. The traffic was still flowing so I ran onto the road to drag them off the road. I have folliculitis so always have some open sores on my body and also cuts on my hands. Could this be a route for transmission?

I don't want to kill myself worrying about where it came from, but if I could figure it out it would probide a measure of irrational comfort.

Thanks.
Confused.