New to forums and hep c-doc says I've been exposed now what

[Kel]

okay I've had my confirmatory testing come back and the GI says I've been exposed. So now tests for what genotype and a liver ultrasound or biopsy. I'm just stuck on how I got it.I don't use needles nor do I work in health. I know I'm focused on the wrong thing.Are the treatment awful, can I still work? I'm scared and embarrassed.

[Mike]

Hi D&C,

The feelings you're experiencing are normal and being scared is one of the first things we express.

To answer some of your questions:

Your initial exposure to the virus could have occurred in a variety of ways, including tattoos, ear/body piercings, sharing a straw when snorting cocaine, sharing needles, toothbrushes, razors, nail clippers, unprotected sex, rendering first aide (when blood is present), passed on at birth by mother and so forth. However, 30% of those with Hep-C never identify the mechanism of infection.

The important thing is that you know you have it, and there are some real effective treatments.

Current treatments have a high success rate and are tailored to the specific genotype you have (genotype 1 is the most prevalent, accounting for 70% of all infected in the US). Presence of liver damage is also used in making treatment decisions.

The ultrasound will help in determining the presence of liver damage and a biopsy will confirm the exact extent.

Some good news:

Treatment is a lot better then it was 5+ years ago, when most people had to endure 48 weeks harsh, grueling treatment of Ribirvin and Interferon. When I first treated in 2001, I had about a 30% chance of clearance. It was 48 weeks of hell and it didn't work.

Today, treatment has been shorten to 12 weeks for most of us, with a 90% chance of a cured.  In fact, some of the new treatments do not require Ribrivin or Interferon, which is a welcomed comfort to those who have ever used either of these drugs!

I just completed a 12 week course of Solvaldi + Ribrivin + Interferon, and I'm currently virus free. If this holds for the next 12 weeks, I'll be designated "cured."

I'm a genotype 1a, have had Hep-C for 30+ years. My viral load was 9,000,00 UL/ml  at the beginning of treatment with grade 2 inflammation and moderate fibrosis.

The treatment was manageable -especially considering what I went through in 2001 - but not without side effects. I was able to work; but I don't have a physically demanding job.

Because the treatment can cause considerable fatigue, I would have had a hard time working a physically demanding job (construction worker, fast-paced production work and so on).

Please note, however, that the side effects can vary and some folks report very minimal effects from treatment.

A few other things:

I know finding out you have Hep-C can be devastating. The silver lining in the cloud, however, is that the treatment has gotten so much better, so much shorter, and so much more manageable.

If there was anytime to find out you have the virus, this would be the time. The new treatments are very effective and a lot of people are being cured.

Simply put, there is now hope - which was pretty scarce when I got the Hep-C dx in 2000.

I hope this helps a little bit and this is a great forum for sharing and receiving  information.

Best wishes, Mike

[Kel]

Thank you for your awesome reply, which mirrored most of what the doctor said. The nurse thinks I'm crazy because I asked if I could be sedated for the biopsy, I have huge anxiety. I suppose if interferon is in the treatment cabinet, I'll get used to needles. Are there any lifestyle changes I can make to help, obviously lay off the grape? 

[Mike]

The biopsy was pretty scary for me and I was sedated.

I remember when I was in the surgical room being prepped for the biopsy, I ask the nurses: Whose going to hold me down? The nurse said: What? I replied: Whose going to hold me down? I'm afraid I'll flinch when the GI sticks the needle in me, and it will break off.

The nurse said: Your to big to hold down. I said: I know I'll jump. Where's the restraints!

The GI came in, said good morning and marked the spot, using an ultrasound, between my ribs where the needle would go. The nurse whispered something to him, a shot went in to the IV, and I woke up in the recovery room not remembering anything else. 

For me the biopsy was the scariest thing. 

As far as lifestyle changes, quit drinking if you haven't already.

Once you know when you'll start treatment, make sure you're head is in the right place and you're committed to get through it.

The treatment isn't as bad as it use to be - but I made sure I was mentally prepared to start and 100% committed to finish. 12 weeks goes by really quick.

Once you know when you'll start and what treatment you'll be doing, let us know and we can give you a lot of pointers and tips.

I'd imagine, you'll have several months before starting - this is a good time to commit to treatment and beating the crap out of this virus!

Best wishes, Mike

[Kel]

That's too funny. I have stopped drinking and am prepared to go through treatment or preparing. I am more worried for my children having to see this and don't want them to worry. I will let you know when I go thru treatment.

[Mike]

The biopsy was the toughest thing for me, as I basically looked at it as volunteering to be stabbed with an ice-pick. I don't say this to scare anyone. In fact, a lot of people didn't have a problem with it - and they say it  doesn't hurt. I just want to be honest regarding my experience with Hep-C and the feelings I've had going through the diagnosis, tests and treatment process.

The treatment can be rough - as it can make you feel like you have the flu - but it's manageable. You're kids should be just fine. You might not feel like tossing a football every weekend; but if you had to you'd be able to. Heck, my daughter got married when I was in week 25 of the old 48 week treatment (this was in 2001), and I went to the wedding, gave the bride away, danced at the reception and so on.

Best wishes, Mike

[lporterrn]

Dear Dazed and Confused - My heart goes out to you. This is a fragile time, but it does get better. At this point, do everything you can to focus on your health - physical, emotional, and spiritual. It will pay off. As for treatment, we are about 4 months away from a pill a day treatment that is very effective and has mild side effects. Most doctors are holding off starting people on treatment now, because the new ones are so much easier. In the meantime, spend time learning about hep C, and getting as healthy as you can.

[Kel]

 

As for treatment, we are about 4 months away from a pill a day treatment that is very effective and has mild side effects. Most doctors are holding off starting people on treatment now, because the new ones are so much easier. In the meantime, spend time learning about hep C, and getting as healthy as you can.

I read that there was a triple medication regimen that was pills and that the side effects were flu-like, but I will place the above information in my information. Now I am just reading on healthier, liver friendly foods and juices and getting another liver panel and ultrasound done, but will hold off on the biopsy as it really doesn't seem to factor into what treatment is. Thank you, blessings

[Mike]

Regarding a liver biopsy:

" Liver biopsy plays a central role in the evaluation of chronic liver diseases, including HCV infection. In 1997, a National Institutes of Health (NIH) Consensus Development Conference Panel endorsed liver biopsy prior to the initiation of treatment of HCV infection. In 2002, another NIH consensus conference noted the following:

"Liver biopsy provides a unique source of information on fibrosis and assessment of histology. Liver enzymes have shown little value in predicting fibrosis. Extracellular matrix tests can predict severe stages of fibrosis but cannot consistently classify intermediate stages of fibrosis. Moreover, only liver biopsy provides information on possible contribution of iron, steatosis, and concurrent alcoholic liver disease to the progression of chronic hepatitis toward cirrhosis. . . . Thus, the liver biopsy is a useful part of the informed consent process."

[jberlin]

Dazed,

Don't be nervous about a liver biopsy at all.  I have had 3 in my life, and now they are CT guided pin pricks compared to what they were like a few decades ago.  That experience in the 1970's would be more akin to a horse kicking you in your side right in the ribs, then having to lay on that side for hours to make sure you didn't bleed!  So, they are nice and easy now, you get a little something to relax, and it is over quickly with a little soreness. 

Biopsy is the only real way to know what shape your liver is in.  They will take a slice, stain it and look at the cells under a microscope.  I wouldn't volunteer to do it for sure, but if the MD says it would help, I wouldn't sweat it either.

I did 72 weeks of treatments, 72 interferon shots, and missed only one day of work.  Didn't feel my best a lot, but you can function!

Milk thistle does seem to be good for the liver.  But, the best thing would be getting rid of those billions of nasty little viruses!

Good luck,
jack

[Kel]

Thank you for letting me know, Jack. I'm reading all over the place and didn't get that bit, Mike.

Blessings,

Kel

[Mike]

Good point Jack.

If my doctor recommended another biopsy, even though the procedure scares me, I'd do it without hesitation.

Best wishes, Mike