Re: Prognosis Question

May 21, 2010

Sophie... you are in the right place. We can help you. The first thing I want you to do is take a deep breath....... now take another one. You are going to be okay. You are probably still in a state of shock from the diagnosis. That is all normal. It's a tough pill to swallow. But it's okay. Yes, most everyone is asymptomatic to Hep C and it is most usually found some strange way like when you tried to donate blood. For me, they were trying to put me on a medication to help migraines and the medication could have caused liver damage so they did a liver panel on me.... Guess what they found. My doctor called me at work and told me on the phone that I had Hep C. I have

worked in the medical field for more years than I could count and I knew what Hep C was. It was the reason I left the medical field. Truly it was. Little did I know, I already had it. I got the virus from a blood transfusion in 1980 when I had my son. 5 units of untested blood. They didn't know about Hep C back then.. well they did but it wasn't common knowledge and blood was not screened for it. I thought my whole world was turned upside down when that doctor told me that... and over the phone no less. Like he was telling me I had strep throat or something. So I know what you are feeling right now. It's okay to be scared, it's okay to cry, but this is not a death sentence. Don't let the poor prognosis that you are reading scare you. When I was diagnosed and facing treatment I was told I had less than a 35% chance of the treatment working for

me and my chances to be able to complete the treatment were even lower. Guess what.. I took the treatment, 48 weeks of it. I have been clear since 2005. It's undetectable in my system right now and my liver is recovering from the damage that was done to it. Your liver is a cool organ. It's the only one that can regenerate itself with healthy tissue. Yes, you need to be good to your liver right now... and forever at this point. You can be nice to your liver but the virus will continue to attack it as long as it's in there. However, considering most people never even know they have this virus and many of them die from something totally unrelated when they are well into their 70's, there is no reason to panic. So right now I want you to breathe again... Deep breath. Your next step is to find a good gastro doctor

or a liver specialist. They have the most knowledge on treatment. And so you know there are new forms of treatment coming out quickly so there will be more options on treatment soon. My liver specialist told me that i had the virus for 25 years. The damage was minimal in my case but nonetheless there was damage. Right now, my liver is looking pretty good. There is hope there are treatments. There is a light at the end of the tunnel and I promise you it is not a train.You've landed in a good place here. There are people here just like you that have just been diagnosed. There are people who are waiting for treatment and some that have gone thru treatment already. There are also those of us who have completed treatment and are "cleared" of the virus. We have lots of information and a lot of support. We will help you. Feel free to ask what you

need to or want to or just vent if you need to do that. We all have our moments here and everyone jumps in to help. I am currently facing a personal crisis right now, totally not medically related at all but these guys have been supporting me for a week now. They even got me to laugh while I was crying. We tend to joke around a bit... sometimes a lot. But laughter is a great medicine. You are going to meet some great people in the next few hours.. just watch your e-mail for the flood of welcomes.Glad you found us... sending you a cyber hug right now cause I can tell you need it. Breathe sweetie breathe. Hugs,Teri in Chicago From: sophiesworld3 <nod102@...> Sent: Fri, May 21, 2010 8:13:01 PMSubject: [ ] Prognosis Question

Dear all,

I am 28 years old and new to this forum. I was diagnosed with Hep C at the end of last week (accidentally, after trying to donate blood). I've been to my doctor and found out today that it's Hep C 1b strain. I don't have any symptoms and the doctor said my liver is fine (not sure about the viral load yet). I'm not sure where to go from here... I was wondering if it is possible to be asymptomatic forever, or does the infection eventually emerge in typical cases? If I'm very "nice" to my liver, is it still possible to get cirrhosis/liver disease/liver cancer? If someone already asked this question before, would someone mind posting a link to it? I can't seem to stop crying all day - all I see is all this information about the poor prognosis of this type of hepatitis, and it's so discouraging.

Thanks!

May 21, 2010

SophieIt doesn't matter if 500 people before you have asked the question!! It's your turn...The good news is that you likely will never feel any pain whatsoever from your liver. Yes, you can be asymptomatic for a very very long time (most of us were); however, the earlier it is found the better!! Actually, it's a double edged sword and why HepC is called the silent epidemic (as well as HepB). They stay silent while they are doing the damage.You likely have not been infected with the Hep for too long and I'll bet that you are healthy in every other way?? The viral load will be just a number and has very little meaning at all. It is more important to get the results of the regular blood work they have run for the Hep. Things like ALT's and

AST's are the liver enzymes. I suspect that they also would not be much over normal at this point either. Usually, no one is looked at too seriously for treatment until those ALT's/AST;s have at least 3 bad readings. So, likely your Dr. wants you to go for either semi-annual or quarterly blood tests??Yes, be very nice to your liver and the best thing of all - DON'T DRINK!! Also, it is of very prime importance to maintain a positive outlook in life AND keep the stress level down to a dull roar.Now, in my case, I was diagnosed also with the 1b genotype. However, I had probably already had the Hep for nearly 20 years and didn't know. So when they felt it was time and did the liver biopsy, I was already at Stage 3 (bridging fibrosis) and Stage 4 is cirrhosis. Last year, just before starting my 2nd treatment, I had slipped to cirrhosis; but, obviously not very much. The good news is - that

treatment worked and thus far I am considered as Sustained Viral Response (SVR). But, please remember, my Hep C had lots of time to do it's damage before I became aware that I even had it. I'll bet yours is still in it's infancy and that gives you lots of time to decide how to proceed.Don't look at the information about a poor prognosis!!!! There are lots of us that are survivors, even with 1b. A new treatment will be on the market by either late this year or early next year. I just finished a Clinical Trial with that particular treatment plan. When it's time, you will have plenty of reason to be to believe that the treatments will work for you!!!By the way, you already have a liver disease. Cirrhosis is probably a great many years away and only about 20% of HepC persons will go on to develop liver cancer and then only after they have had cirrhosis.Chin up girl!!! We are ALL

here for you and will be your best friends or family every step of your walk with the dragon. You never have to be alone!!!Luv Gloria Dear all, I am 28 years old and new to this forum. I was diagnosed with Hep C at the end of last week (accidentally, after trying to donate blood). I've been to my doctor and found out today that it's Hep C 1b strain. I don't

have any symptoms and the doctor said my liver is fine (not sure about the viral load yet). I'm not sure where to go from here... I was wondering if it is possible to be asymptomatic forever, or does the infection eventually emerge in typical cases? If I'm very "nice" to my liver, is it still possible to get cirrhosis/liver disease/liver cancer? If someone already asked this question before, would someone mind posting a link to it? I can't seem to stop crying all day - all I see is all this information about the poor prognosis of this type of hepatitis, and it's so discouraging. Thanks!

May 21, 2010

Hi Natasha

Welcome to the group.

Your among friends here.

We have lots of info, love, and support to share with you.

The first thing all of us go through is the shock, fear, and disbelief.

This is a normal reaction.

But all is not doom and hopelessness.

You are young, 28, and your body is still strong.

Some peoples immune system fights off the HCV, and they clear without treatment.

Some people can live with it.

If you do have to do treatment, your youth gives you a real good chance of achieving SVR [sustained viral responce].

Its time for you to do some stuff.

1 - You need to eat right, live right, and avoid stress. Think positive.

2 - You need to get in and see a Heptologist or Gastrologist, and start working with them.

A GP can diagnose HCV, but a Liver specialist can treat you, and keep an eye on your progress.

3 - Its time to research, and learn all you can about HCV, and your body.

I have been building a HCV Links Library just for this purpose.

I have been searching the internet, and bringing all the HCV info to one place.

Click this link:

http://health.dir./group/ /links

This Library starts off with 'just diagnosed', and proceeds through more and more topics.

There is tons of info here for your use.

Please use it.

We will all try to answer your questions, and no question is too small or 'stupid'.

Ask anything that you like, chat with us, and let us know what you think and feel too.

I am also a genotype 1B, 59 y/o, diagnosed in 2008.

My labs are pretty good, but my viral load is creeping up there.

Viral load alone doesnt mean much, as it tends to go up and down.

Its your other labs that count more.

VL is just how many copies of the virus are floating about in your blood at any given time, not how sick you are.

Now, diet.

You need to cut back on red meats, organ meats, and fried foods.

Iron is a problem with folks who have HCV, and these things have more iron than other proteins, like fish or chicken.

Fried foods are just plain not good for one, in my opinion, because fried foods cause digestive problems.

You need to eat healthy, and this means more fruits and veggies, raw if possible.

Diet is one of the ways we can help ourselves be healthier. No doctor needed.

There are also suppliment one can take for a healthier body.

Also theres watching out what you consume, breath, or absorb thru your skin.

Most everything is processed by our livers, so the less strain you put on your liver, the better off you will be.

DO NOT DRINK ALCOHOL at all.

If you smoke, try to stop.

If you do drugs, cut back or stop.

Drink lots of water. This dilutes things going through your liver, and will keep you hydrated.

Theres more in the Library on diet.

My last point, HCV usually progresses pretty slowly.

I have possibly had mine for 30-40 years, and Im not real sick yet.

Other folks progress a bit faster, or slower.

We are all different, and respond differently.

Your youth and general health may mean that you might have years before you do become sick.

Should your H-doc advise you to treat, the sooner you do it, the better your chances.

Ok, Natasha, try to relax a bit, and let your fears subside as best you can.

Chances are in your favor, and you may be ok.

Think good thoughts.

We will talk more my friend.

Your not alone and there are lots of answers.

love

don in ks

From: sophiesworld3 <nod102@...>Subject: [ ] Prognosis Question Date: Friday, May 21, 2010, 8:13 PM

Dear all, I am 28 years old and new to this forum. I was diagnosed with Hep C at the end of last week (accidentally, after trying to donate blood). I've been to my doctor and found out today that it's Hep C 1b strain. I don't have any symptoms and the doctor said my liver is fine (not sure about the viral load yet). I'm not sure where to go from here... I was wondering if it is possible to be asymptomatic forever, or does the infection eventually emerge in typical cases? If I'm very "nice" to my liver, is it still possible to get cirrhosis/liver disease/liver cancer? If someone already asked this question before, would someone mind posting a link to it? I can't seem to stop crying all day - all I see is all this information about the poor prognosis of this type of hepatitis, and it's so discouraging. Thanks!------------------------------------

May 21, 2010

Dear Teri,

Thank you so much for your support and for being so giving! I'm certain it will

pass soon... It's just that right now life feels like " before " and " after, " you

know? But this illness is just something that I will get used to managing on a

day-to-day basis, one day. I hope that day is soon, because I don't like feeling

the way I feel now. In fact, I am going through a lot of anger at myself right

now for feeling like this. I don't want to ask " why, " or " why me, " or to feel

sad in general, because I feel that it is so unproductive. Yet, I can't seem to

stop feeling sad... or think about how I do absolutely everything the opposite

of any known risk factor, so having this disease seems impossible... But feeling

like this makes me more angry, because I know it's just statistics and it's not

my fault... and so the cycle continues... I know that I have to accept feeling

sadness in order to heal on the inside and move on, yet I still cannot do it.

Again, thank you so much for your support - it is so invaluable! I am very sorry

for your pain right now - many warm hugs to you, dear Teri!

-Sophie

>

> Sophie... you are in the right place. We can help you. The first thing I

want you to do is take a deep breath....... now take another one. You are going

to be okay. You are probably still in a state of shock from the diagnosis. That

is all normal. It's a tough pill to swallow. But it's okay.

>

> Yes, most everyone is asymptomatic to Hep C and it is most usually found some

strange way like when you tried to donate blood. For me, they were trying to

put me on a medication to help migraines and the medication could have caused

liver damage so they did a liver panel on me.... Guess what they found. My

doctor called me at work and told me on the phone that I had Hep C. I have

worked in the medical field for more years than I could count and I knew what

Hep C was. It was the reason I left the medical field. Truly it was. Little

did I know, I already had it. I got the virus from a blood transfusion in 1980

when I had my son. 5 units of untested blood. They didn't know about Hep C

back then.. well they did but it wasn't common knowledge and blood was not

screened for it. I thought my whole world was turned upside down when that

doctor told me that... and over the phone no less. Like he was telling me I had

strep throat or something. So I

> know what you are feeling right now. It's okay to be scared, it's okay to

cry, but this is not a death sentence.

>

> Don't let the poor prognosis that you are reading scare you. When I was

diagnosed and facing treatment I was told I had less than a 35% chance of the

treatment working for me and my chances to be able to complete the treatment

were even lower. Guess what.. I took the treatment, 48 weeks of it. I have

been clear since 2005. It's undetectable in my system right now and my liver is

recovering from the damage that was done to it. Your liver is a cool organ.

It's the only one that can regenerate itself with healthy tissue.

>

> Yes, you need to be good to your liver right now... and forever at this point.

You can be nice to your liver but the virus will continue to attack it as long

as it's in there. However, considering most people never even know they have

this virus and many of them die from something totally unrelated when they are

well into their 70's, there is no reason to panic. So right now I want you to

breathe again... Deep breath.

>

> Your next step is to find a good gastro doctor or a liver specialist. They

have the most knowledge on treatment. And so you know there are new forms of

treatment coming out quickly so there will be more options on treatment soon. My

liver specialist told me that i had the virus for 25 years. The damage was

minimal in my case but nonetheless there was damage. Right now, my liver is

looking pretty good. There is hope there are treatments. There is a light at

the end of the tunnel and I promise you it is not a train.

>

> You've landed in a good place here. There are people here just like you that

have just been diagnosed. There are people who are waiting for treatment and

some that have gone thru treatment already. There are also those of us who have

completed treatment and are " cleared " of the virus. We have lots of information

and a lot of support. We will help you. Feel free to ask what you need to or

want to or just vent if you need to do that. We all have our moments here and

everyone jumps in to help. I am currently facing a personal crisis right now,

totally not medically related at all but these guys have been supporting me for

a week now. They even got me to laugh while I was crying. We tend to joke

around a bit... sometimes a lot. But laughter is a great medicine. You are

going to meet some great people in the next few hours.. just watch your e-mail

for the flood of welcomes.

>

> Glad you found us... sending you a cyber hug right now cause I can tell you

need it. Breathe sweetie breathe.

>

> Hugs,

> Teri in Chicago

>

> ________________________________

> From: sophiesworld3 <nod102@...>

>

> Sent: Fri, May 21, 2010 8:13:01 PM

> Subject: [ ] Prognosis Question

>

> Dear all,

>

> I am 28 years old and new to this forum. I was diagnosed with Hep C at the end

of last week (accidentally, after trying to donate blood). I've been to my

doctor and found out today that it's Hep C 1b strain. I don't have any symptoms

and the doctor said my liver is fine (not sure about the viral load yet). I'm

not sure where to go from here... I was wondering if it is possible to be

asymptomatic forever, or does the infection eventually emerge in typical cases?

If I'm very " nice " to my liver, is it still possible to get cirrhosis/liver

disease/liver cancer? If someone already asked this question before, would

someone mind posting a link to it? I can't seem to stop crying all day - all I

see is all this information about the poor prognosis of this type of hepatitis,

and it's so discouraging.

>

> Thanks!

>

May 21, 2010

Dear Gloria,

Thank you so much for your post - it put the biggest smile on my face

Although I'm not sure how long I've had this (possibly from the 80's, when I had

blood work done in the Soviet Union - that's where I was raised), it looks like

I don't have any liver damage, at least judging by the blood tests. I have an

appt with the GI next week, so I'm hoping to get more information about the

state of my liver, and perhaps a biopsy, if he thinks it's a good idea. I'm so

glad you have responded great to your treatments!! Does this mean you are cured,

for the purposes of detecting Hep C?

>

> Sophie

>

> It doesn't matter if 500 people before you have asked the question!! It's

your turn...

>

> The good news is that you likely will never feel any pain whatsoever from your

liver. Yes, you can be asymptomatic for a very very long time (most of us

were); however, the earlier it is found the better!! Actually, it's a double

edged sword and why HepC is called the silent epidemic (as well as HepB). They

stay silent while they are doing the damage.

>

> You likely have not been infected with the Hep for too long and I'll bet that

you are healthy in every other way?? The viral load will be just a number and

has very little meaning at all. It is more important to get the results of the

regular blood work they have run for the Hep. Things like ALT's and AST's are

the liver enzymes. I suspect that they also would not be much over normal at

this point either. Usually, no one is looked at too seriously for treatment

until those ALT's/AST;s have at least 3 bad readings. So, likely your Dr. wants

you to go for either semi-annual or quarterly blood tests??

>

> Yes, be very nice to your liver and the best thing of all - DON'T DRINK!!

Also, it is of very prime importance to maintain a positive outlook in life AND

keep the stress level down to a dull roar.

>

> Now, in my case, I was diagnosed also with the 1b genotype. However, I had

probably already had the Hep for nearly 20 years and didn't know. So when they

felt it was time and did the liver biopsy, I was already at Stage 3 (bridging

fibrosis) and Stage 4 is cirrhosis. Last year, just before starting my 2nd

treatment, I had slipped to cirrhosis; but, obviously not very much. The good

news is - that treatment worked and thus far I am considered as Sustained Viral

Response (SVR). But, please remember, my Hep C had lots of time to do it's

damage before I became aware that I even had it. I'll bet yours is still in

it's infancy and that gives you lots of time to decide how to proceed.

>

> Don't look at the information about a poor prognosis!!!! There are lots of us

that are survivors, even with 1b. A new treatment will be on the market by

either late this year or early next year. I just finished a Clinical Trial with

that particular treatment plan. When it's time, you will have plenty of reason

to be to believe that the treatments will work for you!!!

>

> By the way, you already have a liver disease. Cirrhosis is probably a great

many years away and only about 20% of HepC persons will go on to develop liver

cancer and then only after they have had cirrhosis.

>

> Chin up girl!!! We are ALL here for you and will be your best friends or

family every step of your walk with the dragon. You never have to be alone!!!

>

> Luv Gloria