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This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

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Newbie

Hey Everyone,

I have never posted before. I am 20 years old and was diagnosed last April with Hepatitis C, after donating blood. I got the Hepatitis from and infected blood transfusion when I had surgery as a 6 week old baby. So I have had Hep C for 20 years with out knowing I did. I just had a liver biopsy in December and it showed that I am definitely in Stage 2 and signs of 3. My Dr. wants to start treatment in the spring after I get out of school. I am a full time student at a University. I was wondering if anyone could exlpain what the treatment is really like, what does it entail. I go away every summer and still plan to this summer, but does everyone get sick from the treatment. I am very confused and concerned. I would appreciate any comments or help.

Thank you very much,

Jenna
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Avatar_n_tn
Hi Jenna.  I'm a newbie, too...although considerably older than you (I'm 44).  There are many others here who are much more knowledgable than I am about HCV and treatment (I've decided to postpone tx), but I wanted to at least welcome you and tell you that you can get through this challenge.  It's natural to be scared of the unknown, but as you travel further down this road, you'll find that HCV is usually only a bump -- not a mountain -- to overcome.  It's important that you continue to stay focused on your goals -- you have a life to live.  Don't let this derail ANY of your plans. Stay strong and keep the faith.  You'll be okay.

Susan
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Avatar_n_tn
Hi Jenna:  I, too, have had the virus for about 20 years, being infected by a blood transfusion during an appendectomy in 1984.  You're a step ahead in the process from me.  I have my first appointment with a hepatologist next week, where I'm sure he'll schedule the biopsy.

Anyway, through all of my research and chatting online and posting messages I've learned that only TWO things are certain with this thing, and that's 1) the progression and impact of the disease is different for everybody and 2) treatment affects everyone differently.  You'll see just on this forum that some people have minimal sides, some are practically bedridden (that may be extreme!).  Some people have bad sides at first, then they subside.  Some have no sides to begin with, then get hit with a brick.  There seems to be no way of knowing how you'll respond until you start treatment.

What is your genotype?  If you're 2 or 3, you'll most likely "only" have to do 24 weeks of tx.  I know that doesn't help much in terms of your summer plans, though.  I'm 2b and am grateful that, in case sides are bad, it won't be a full year of them!
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Avatar_n_tn
hi honey...welcome.....do you know what "geneotype" you have....as there are several and require different lenghts of treatment....if you do not know....ask you doctor immediately, PHONE NOW  ..ask if he did the  test for GENEOTYPE, if not, have him do it NOW!!!, it take several months here (canada ) to have the results from that test, although, they may do it faster or differently in the states.....genetype...1a....1b...=48 wks of treatment
geneotype 2 or 3.....=24 weeks of treatment....

also being so young you may not get as slammed with side effects as most of us old people here....you, may just breeze through treatment feeling only slightly flu like, but may very well be able to continue your studies etc with out a disruption in them at all....

let us know about the geneotype okay....hang in there kiddo...it WILL BE OKAY!!!!
kimmy
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Avatar_n_tn
You're young -- that is a good thing. You should be able to tolerate the side effects of treatment easier than many. I am 47 and just completed 50 weeks of treatment -- missed maybe 2 weeks of work but was able to go on vacation this last summer and maintained a pretty normal life.

I think treatment is different and the same for most people. Everyone gets some of the side effects, we never get them all. Some people's white blood cell counts drop, some people's red blood cell counts drop (you can bet on that with the ribavarin). It sort of feels like Super-Flu: achey (achy), brain is foggy, tired, etc.

Check out the links below.

<a href="http://janis7hepc.com/index.htm">Janis and Friends Hepatitis C Support</a>

Great reference for HCV with lots of information.

<a href="http://www.hepcsurvivalguide.org/">The Combo Survival Guide from A to Z</a>

A good treatment guide with tips on what to expect, how to handle it, etc.

<a href="http://www.hepcassoc.org/links.html">Hepatitis C Association's links page</a>

There are plenty of great sites here that you can read.

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Avatar_n_tn
I think I am type 1.
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Avatar_n_tn
can you find out for sure!!!!!!CALL HIM cause that is VERY...TRES IMPORTANT.....as it dictates the lenght of treatment...24 weeks...verses....48 weeks..BIG difference

also forgot to add to previous post...
what to expect.....treatment will consist of daily ribavirin...or the equivilant if doing peg....usually 2 pills in the am and 2 pills in the pm and then once a week your injection, which you will learn to do by yourself, there really is no magic and it may very well as i said before, be much kinder to you as you are so young....but still, even though i seem to be getting  slammed with EVERY SINGLE SIDE EFFECT...it is still NOT TOO BAD...so thats worst case senerio.....i somehow think you will not be as effected.....but the sooner you know some answers the better, the uncertainty and the waiting are probably some of the most frustrating and difficult parts of this.....
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Avatar_n_tn
welcome to the club. I was getting pretty sick before i started tx. I was one of the ones who had some pretty bad symptoms of hep c. real bad pain in my side,severe fatigue,itching like I had been attacked by a colony of mad chiggers and nausea in the mornings. Tx was not good to me. I was one of the ones who was practically bed ridden. of course I was 42 when I started tx and I think us old timers have a worse time than you youngsters. The good part is I am better now than I have been since I was about 35.
   Also I know where i got my hep-c ,I stuck a bunch of needles in my arm when i was fifteen and now it has caught up to me. I hate to hear about people who had no choice in the matter getting this ****. But what can I say we are here now so we have to make the best out of the hands we have been dealt. You are young and YOU CAN BEAT THIS THING. You can go on and have a full life and put this all behind you. I know it is tough being told that you have something that can kill you. I cryed allot when I was diagnosed. I was really angry. Here I was three years clean and sober and getting a real life started and BAM now i may not be around along time. What an Ironic twist of fate. a nice home with a new wife and now this.
just go about this one step at a time and you can make it. There are allot of good people here who will walk through it with you. I will pray for ya with the rest opf these guys, so hang in there.    
                        Sam
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Avatar_n_tn
Hi and welcome,
I'm 26 yo myself and I think I got HCV just like you - through blood trasfusion at birth (less likely at dentist office).
I'm on treatment now (Pegasys/Copegus), week 22/48, genotype 1b, baseline viral load 724K UI/ml.
Sides were minimal... As I remember, first 6 weeks or so I was able to play tennis, though not every day. Usually I got headache and fever during 24-48 hours after the shot. First shot was something... fever(102F/38C), chills, back pain, you name it, but only first one! Then by week 10 I was not running fever after the shot nor had I "usual" headache.
Now I feel pretty good, my energy somewhat returned though walking for 2 hours makes me sick.
Btw, I'm also in University.
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Avatar_f_tn
can someone explain the difference between stage 2 and stage 3?

thanks.
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Avatar_n_tn
I only have a couple things to add to what everyone else has said.  First, Be sure to drink plenty of water as this will help keep you hydrated and keep the sx down a little; as well as help with the energy level.  If you get dehydrated, you'll feel even more dragged down than you would normally with this tx.  Your RBC's will drop which will cause you to tire much easier than before.
  Second, decide what day of the week would be best for you for the shot.  You'll need to try to do the injection the same approx. time/day each week to keep the meds as even as possible in your system.  I do my shot on Fri mornings and don't make any definite plans for Friday/Saturday til I see how the sx are affecting me each week.  I've had a couple bad wks but overall it's been pretty good.  And I feel great most of the time except that I do tire much easier and can't do quite as much as before starting tx.

Good luck with your tx.
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Avatar_f_tn
Thanks.  I will be asking my dr about this when I have the follow-up for the biopsy.
candy
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