Just Diagnosed / Very Scared

[billstrong1969]

I'm a 38 year old gay male and was just diagnosed with HEP C today.  I was told I have chronic HEP C Genotype 1 and am a carrier.  My doctor has referred me to a radiologist to have a liver biopsy done probably next week to determine if my liver is damaged and if so how badly.  They use a scale of 1 thru 4, 1 being minimum damage and 4 being a lot of damage.  He's told me that if it comes back a 1 or 2 then he'll wait a year or too and then check my viral load again.  But if it comes back a 3 or 4 then he'll start me on the interferon treatment.  I'm very scared and it all seems surreal right now.  I have absolutely no symptoms whatsoever.  I do recall having hepatitis about 15 years ago when I used to shoot drugs but he said that that was probably a HEP B and since I've been immunized for that then I'm not carrying it.  So I'm sharing this in hopes that I'll get some feedback as far as advice, and words of hope and encouragment.  I asked him, so am I going to die from this and he said not necessarily that most people generally die from other things first.  I mean I guess I wanted to get right to the point.  My partner has an uncle in California that has HEP C and he is about 54 years old and recently finished his treatment and now his is gone.  I'm worried about the liver biopsy as I'm afraid it's going to hurt.  I'm a baby when it comes to anything like that.  Please share with me some experiences and help me not to be so bent out of shape.  Thank you so much...

Bill

[FloridaMouse]

Everyone else has given you great advice.  I just wanted to wish you luck.

Mouse
Genotype 1a, Stage 3, Grade 3
Finished tx 4/13/07
Hoping for SVR on 9/20/07

[Frank J. Perrotta]

Good luck with the biopsy and the decision to treat or not.

I am also a gay male and wasnt fearful of the biopsy but it hurt like hell. I wasnt given any kind of anti-anxiety or pain med before hand but wish they offered it. The worse news was when the doc sad sorry we have to go in again and get a second sample. I was kept in bed for a couple hours to be sure there wasnt any bleeding then let go. It was only slightly painful a bit when I laughed so dont rent any comedies...

My condition sounds like yours. Surprised to find I had it and figured I got it when I experimented with drugs 20 years earlier. Super healthy carrying it for 20 years. I had a 1 on the liver damage, had stopped drinking completely (was only a light beer drinker anyways) had super low virus count and a type that doesnt respond to treatment well but the docs scared me into treatment. I wish I had your doctor and I hope you have a 1 or 2 in liver damage and dont treat.

If you want to read up on my first post here about my horrific life after treatment go here:

http://www.medhelp.org/posts/show/286686 titled: "Two years off treatment and still suffering!"

Dont know of a better way to link to an internal post on the same forum???

Let us know how it goes with the biopsy! and liver condition.

good luck,
frank

p.s. your lucky to have found this forum. People here are so supportive and knowledgable about it all. I found it after treatment so lost out on a lot of great info.

[alagirl]

Mine wasn't that bad, and I had a full blown lap surgery on my liver. From what I'm reading from these other folks, yours will be even much easier.  I have a feeling mine was a little more involved because they were trying to go further in to get a biopsy of the tumor I have.  Going back over what these folks are saying, a simple liver biopsy is even less invasive (which I didn't realize) and easier to recover from.  So you should definitely not worry about this.  ;)

[jmjm530]

In general, there's no pain from a liver biopsy. Maybe some soreness for a few hours but I guarantee you'll wonder what the big deal was about when it's done. Sometimes they give you pain med to take home if you need them. I never did and therefore never took them. The fact that you appeared to have a symptomatic case of acute Hep C 15 years ago (many of us have no symptons) is in your favor. Those with a symptomatic acute stage tend to have less liver damage or better treatment response (forgot which) but in any event it's a good sign. Your doc pretty much has it right in terms of whether you should treat now or not, basing it on how much liver damage you have.

-- Jim

[alagirl]

Bill, I had a liver biopsy two years ago, ironically, for a completely unrelated reason.  I was overdosed with iron by a hematologist who thought I had iron deficiency anemia when really, I have anemia of a different type.  The iron levels in my bloodstream were very high, and I had developed a tumor in my liver, and the doctors wanted to try to get a biopsy of it to make sure it was benign.  Turns out they couldn't get to the tumor, but they were able to get a liver biopsy.  At any rate, I'm sure that as with my surgery, yours will be a lap.  Probably a day surgery.  It's not that bad, you'll probably be home the same day, or the next at the latest.  They will probably do two or three very small incisions.  The pain is not bad at all, except that it's a little uncomfortable when you sit down for a while because your liver is so high that one of the incisions is fairly high up and gets squeezed a little.  But I've had several lap surgeries in my lifetime and the liver biopsy was one of the least painful (try not to have a double hernia surgery any time soon, those REALLY HURT!) lol

You will do ok! ;)  My best advice with any surgery is to take the pain medication they give you as soon as they allow it for the first two or three days so that you stay on top of the pain.  If the pain gets on top of you it is more difficult, but if you stay on top of the pain, you have a far easier recovery.  Staying on top of the pain also helps you to get on your feet and ambulate sooner, which helps you heal more quickly.

[stacyb321]

Just had a biopsy 2 weeks ago - and it was a cakewalk.....no pain just a little pinch and its over.  They gave me a xanax beforehand and it really made me calm.  You have to lay on your side for hours afterward.  You'll be fine.

[GoofyDad]

If like me, you're reluctant to go the God route, you could try scattering chicken bones in a circle and placing a quartz crystal under an Oak tree - all during a new moon, of course. If in California, be sure to go with organic chickens.

[sfwandwow]

hey the liver biospy is a breeze trust me i had all that anxiety.. But foremost get right with GOD and he will take care of you... Hugs

[cajunlady]

It is very shocking when you first find out, but this is not a death sentence.  The biopsy is not that big a deal; a little uncomfortable is all.  You will be fine.  I was Stage 2 and treated for 48 weeks, I am a geno 1b.  Today I am post 8 months and am Undetected for virus (UND).  Biopsy is very, very important to get, it is the ONLY way to find out how much damage it has cause on your liver.  Don't worry much you will get through this.  Most people die of old age before HepC, hope that helps relieve your worrys.

Have a great weekend and keep posting here, you will have lots of help and lots of knowledge given to you here.

Cajun

[Jakied]

Some comments:

1) if you drink alcohol or use drugs, STOP.  Mixing alcohol or drugs with Hcv is like putting out a fire with gasoline.

2) hep B is usually transmitted by sexual activity so i have a feeling you never had hep b but have had hep c for 15 years.  Hep c is usually transmitted by blood tranfusion and drug use.  I am not judging anyone but those are the facts.  Hepc is not a Std as hep b and hiv are.

[dlr2007]

I know it's scary as all h=ll at first- but it'll be OK. I'm 38 too and was dx'ed (diagnosed) in '93 when I was pregnant with my 1st kid. Awful! But it's not the end of the world- I still have minimal damage after probably about 17 years of having it. As Goofy and Koala said, the bx (biposy) is no biggie- ask for Versaid (not sure of the spelling). I had that on my 2nd bx and it really helped me chill, as I am VERY highstrung in those situations. Even if you hafta do the treatment now, it's not so bad for many people. I did it when I was 26 and had no side effects at all. It didn't clear the Hep C but hey, I'm still kickin around anyway. This will all start to seem less horrifying as you learn more and get used to having it. Keep reading on here- that's how I learned everything I needed to know about Hep C! And the people here are so great, tons of support.
  You're in my prayers.
Dee

[billstrong1969]

Thank you for your thougts.

[koala68]

I was born in 68, so just one year older than you. I discovered it two years ago and just finished a one year treatment last week for Hep C. The liver biopsy is not as bad as it sound. It's important to get one so you will know how much damage you have to your liver and how urgent it is to treat. Don't worry. HepC is a very slow disease and even curable. Adopt a long term strategy to fight the disease.
For now, don't drink. eat healthy, exercise a bit... get more educated about every aspect of Hep C, treatments options, etc and you'll be fine.

[GoofyDad]

The worrying and anxiety is what gets you the most.

Generally you'll have an untrasound prior to biopsy just to get the lay of the land. Most of us had no trouble with the biopsy -- I was groggy then swam in the pool the next day. Your doc sounds spot on about whether to treat or not - although some top notch docs say to treat if stage 2. A compelling reason to wait is the new classes of drugs that promise to mak treatments shorter with higher success ratios.

This will all absorb and start feeling less shocking before long. We know how you feel - we've all walked in your shoes. Which isn't to take away from what you're going through - that's your own journey.

Take care.