scared and confused!!

[suzieq22]

I am 18 years old and I recently found out I have hepatitis C.. I was and still am very scared about the whole thing because I do not really understand it.  I know that the number of (I guess) hep c cells in my body is very low.. I do not know what anything about it means and the doctor does not do a good job explaining things to me.  He said he couldn't say whether or not I should do the therapy because everyone is different.  Would it be better for me to get treatment while my hepatitis c is not very bad.. or should I wait for when I really need it? and if you do treatment and it does not work, you cannot do it again, right? someone help me understand!! please!

[jmjm530]

hi Susie,

First, you have to understand there are no doctors here, but will do the best we can to try and help, but in order to help you better could you please answer a few questions. If you don't have the answers, please get them from your Dr.

1. What is your genotype?

2. What is your viral load in international units per milliliter?

3. if you had a biopsy, what stage liver damage to you have? if you didn't have a biopsy, ask your doctor if these planning on giving you one? if he isn't, ask them why not.

4. is your Dr. a general practitioner, gastroenterologist or hepatologist?

if you give us the answers to these questions, it will be a lot easier to answer your other questions.

[lalapple]

hey there!  i'm 18 and i'm treating now.  if you are having trouble deciding whether you want to tx or not, many here would recommend that you get a liver biopsy to determine whether your body needs the tx now or to start later when you really need it.  it's a big and tough decision.  viral load doesn't really paint the clearest picture of how damaged someone's liver maybe.  like your doc said, everyone is different.  i didn't get a biopsy bc i suspected that i might have had hcv for a while, and since i heard that the younger you tx, the better, and less side effects,  i went for it and my viral load has been undetectable since wk 12 of my 48 wk treatment.  i wanted to get rid of this virus fast and didn't want it to hamper my future, i have big dreams.

and if you do treatment and it does not work, you cannot do it again, right?
- wrong, you can do it more than ones and there are many different approaches for non-responders and relapsers.  we also have many people here who are on trial for the new, promising medications.  the key during tx is consistency, you don't want to miss a dose bc you don't want to give the virus a change to replicate and mutate into a resistant strain.

[Marc1955]

It's a drag that someone so young has to deal with this. Life sure does throw some curveballs, doesn't it?

The likelihood is pretty good that at your age your liver is still healthy and that the illness hasn't taken much of a toll. Usually the disease progresses over the course of a lifetime. But you'll need tests to establish that is the case.

One thing you will need to do is stop drinking alcohol. That can accelerate the progress of the disease.

What you have in store over the next year are a bunch of test. Do you think you might have access to a specialist rather than your regular doctor? Regular doctors aren't trained to treat this disease. Ideally you want to find a hepatologist (liver specialist) to be your doctor. That might be your first task - find a doctor you like who can oversee your treatment.

Then you'll want to get a series of tests. You'll want to know the genotype of the HCV because that will tell you a lot about your treatment options. As Bill says, a liver biopsy is very important.

Good luck. I think you'll find over time that this illness is pretty manageable for you. Unfortunately it does require you to inform yourself and advocate for your own health. Probably the most important thing you can do is lead a healthy lifestyle. Eat right. Exercise. Avoid alcohol. If you are overweight, it is important to lose the extra weight and get into the normal BMI index range. All good things whether you have HCV or not.

[Bill1954]

Hi there,

Sorry to hear of your diagnosis. Are you sure you have been diagnosed with active Hep C (HCV)? There are a lot of things to learn about your disease before you consider treatment. This is generally a very slow moving illness, and you should have plenty of time to make treatment decisions; try to read and ask questions before jumping into the treatment.

The viral load is a measurement of the virus in your blood; you should be able to get this from your doctor; just ask him/her for copies of your lab results, and you can begin a file; this helps you communicate with people in this forum as well as present info to other doctors if needed. More importantly at this point is to ask the doc what your ‘genotype’ is; this describes the ‘strain’ of Hep c you have; for instance, genotype 1 is the most prevalent strain in the U.S., but the least responsive to therapy. Other genotypes respond better, but are less common here.

The need for treatment is often determined by liver biopsy; wile this might sound frightening, it’s actually a very easy procedure, and is generally painless. Depending on your genotype, the doctor might not recommend biopsy, though.

Here is a link to a good informational website you might want to read:

http://janis7hepc.com/

You can open the section “newly diagnosed’ at the top of the page, or read any of the articles listed as ‘other Hep c information’ in the right-hand margin.

Hang in there, and keep asking questions; there are a lot of people in here that care, and will help you through the process.

Take care—

Bill