Prognosis Question

[Kirvaz]

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!

[Missy114]

I'm still fairly new to all of this too, but I wanted to welcome you to the group and let you know that you will learn a lot from the people here. I think I learned more from this forum than I learned from any of the doctors I've seen so far! I'm also young (27) and also found out when I tried to donate blood. Getting that certified letter from the blood center was one of the scariest days of my life. I guess I'm thankful that at least it was ONLY Hep C and not HIV.

I know you have a lot on your plate right now. I think the more research you do, the better you will feel. Good luck!

-Melissa

[Diane12855]

I was devastated too back in January of this year... Thought I'd never make it to my dr. apt, and then when he told me the next steps and how much time would lapse between each step I felt like he was conspiring to make me go totally crazy.

It doesn't really matter how you got it, what does matter is that you know now, and there is lots of info available to you on this site as well as the one Bill recommended above. I also got a lot of info from HCV Advocate and even the CDC website.

Unfortunately, a lot of doctors haven't kept up with hep C since they were in med school, so you need to educate yourself so you will know if they are answering your questions correctly. If they don't, don't bother to argue with them, just find another doc. I started with a GI but changed to a hepatologist and am so glad that I did!!!!!!!!!!!! Even though I have to drive twice as far, the whole staff is very aware of what I am dealing with in treatment, and they return my calls within an hour... whereas the GI took up to a week. You need somebody who knows how to deal with everything you will be experiencing...anxiety being one of them. I know some people feel uncomfortable questioning a doctor's advice... kind of like they are gods or something... fight that urge, they are just human... and you are providing their paycheck... You should feel like you are important to them, because you are.

Hang in there!
Diane

[Bill1954]

It looks like you’re getting pointed in the right direction so far. Sorry to hear of your recent diagnosis; HCV can be a pain in the rear at times, but for the most part, it’s manageable. Look through Janis and Friends for general info on the disease; I’ll link you to their page for newly diagnosed:

http://janis7hepc.com/have_you_been_just_diagnosed.htm

Be sure to also review the section ‘other HCV information’, located in the right hand margin of the page. This site is worth book marking for future reference, by the way.

I was diagnosed in 2004 with genotype 1 and stage 3-4 fibrosis; I completed the interferon therapy, and am now rid of the virus. There are new drugs in clinical trial now that are expected to increase the efficacy of treatment, and expected to be released sometime next year.

Welcome to the discussion group, by the way; and good luck—

Bill

[Kirvaz]

haha   I can just picture us all accidentally getting MDs on the way! :)

That's a great idea about the hepatologist - I'll give that a try, if the GI does not work out. It's about a 1.5 hour drive to normal-sized towns and a 4 hour drive to real civilization from where I live (a tiny college town), but it might be worth it!

[RobertBeWell]

I've heard some people are very happy with a GI, others aren't. Probably just depends on how many HCV patients they have treated.

I myself prefer a hepatologist (liver doc). And one whose practice consists of a lot of HCV patients. Depending on where you live, that may not be possible.

Give the GI a shot and see what you think. Over the next week before your appointment, you're going to be getting a lot more educated. Write down questions. You'll have a good feel for how much the doc knows about your disease. If he/she seems like a newb, look elsewhere if possible.

Get, and keep copies of ALL your lab work. Before long, you'll be reading it like a pro.

You've got lots of time.

Robert

[Kirvaz]

Hey Robert and everyone!

Yes, I'm looking forward to getting more used to this, and less sad :) No, the doctor did not do a biopsy. They just looked at my blood and said the liver functioning appears normal. I have an  appointment with a GI next Friday, so we'll see how that goes.

Would you guys recommend seeing someone else besides a GI, like an infectious disease specialist?

[Kirvaz]

Dear Dave,

Thanks so much for your reply! I am not at all sure how I could have possibly gotten the disease, given that my characteristics are the opposite of every risk factor. I think I might have gotten it in the 80s, through getting bloodwork done. Not sure...

[RobertBeWell]

I'm thinking the general idea is that the OLDER you are when you get it the worse off it can be. I've had mine for probably 35 years or so, since I was a late teenager. When you're younger, as with most things, you're body is more up to the challenge of keeping it in check. That's why most of us never know we have this till decades later.

So, being younger is better.

Seriously, I know it's a tough blow (it is for all of us at first) but once the panic goes away - and it will - you'll be getting educated, and you'll calm down a lot.

The important thing at this point is:

1. Make certain to follow up and get the proper referrals from your doctor. Many of them don't know very much about Hep C... and some will even tell you to just forget about it. Obviously, with such a good chance of getting rid of it, ignoring it is probably not very wise.

2. Get educated. Education will overcome the fear. Promise :-D

It may take a little while to get over the initial shock, but really, the prognosis is very good, and it's going to get a lot better in the next 12 months.

And this thought is always one which I find makes it easier for me:

Knowledge is power. And now that I know I have it - I CAN DO SOMETHING ABOUT IT!

Robert

[spectda]

I think most of us panic when we first hear we have hep c. Some people never have there disease progress. Talking care of your health, eating correctly not being overweight, exercise and not drinking alcohol will certainly help but not insure that you won't have the disease progress.

The good news is that this disease takes a very long time to progress in most people. A lot of people never feel any symptoms until the disease has progressed to an advanced stage, others have symptoms earlier.

Treatment for this disease is advancing quickly recently. Having a disease that infects so many people worldwide has given the drug companies a huge financial incentive to come up with medications that will most likely cure you before you get any where close to sick if you have not had the disease very long. Very long meaning 20-40 years

Do you know how long you have had it hep c? Your doc said you're liver was in good shape, did he do a biopsy?

Try to relax, I'll bet you're gonna be okay-dave



Do you know how long you have had the disease?  

[Kirvaz]

Thank you so much, Robert! :)

Unfortunately, I'm not sure how long I've had it (possibly from blood work in the 80s). Do you happen to know if getting it in childhood changes the prognosis?

Again, thank you so much :)

[RobertBeWell]

The prognosis is not poor at all my friend. First of all, calm down. Many of us on here have had this for 30+ years before we found out. It's a very slow moving disease.

The statistics tell us that out of 100 people who have HCV, 20% or so will eventually develop cirrhosis. An even smaller percentage will have complications worse than that.

So, that means 80% of the people will not progress to cirrhosis.

While it's true that genotype 1 is a tougher one to cure (I'm 1a), you're actually finding out at a very good time - in the next year or so, there are new drugs coming on line that increase the cure rate dramatically, to as much as 80% in some cases.

Even with the current treatment, you still have about a 50/50 chance of curing it. There are TONS of people on here with Hep 1a/b who are now SVR (cured).

So, it's not as bad as it seems. Others will be along soon to provide more information. For starters, I would recommend the Janis and Friends website, they have a ton of information for "the newly diagnosed". Just google up "Janis and Friends".

And remember, this is NOT a death sentence. At your age, the odds are very much in your favor.

Welcome!