Just got diagnosed. The doctor scared the crap out of me

[EricManicus21]

Apparently my viral load is very high. He said it is possible to treat, but painted a deadly picture. I left thinking I have a death sentence. According to him I must have had this for years. I will be doing an ultra sound as soon as possible to check the health of the liver and then will meet up with a stomach doctor to follow up.

The physician seemed convinced I got it from sex. The other options are drugs or blood transfusion.

I have never shot up in my life. I have never had blood transfusion. I haven't had unprotected sex until about a year ago with my girlfriend (what are the chances I passed this on? I have ruined another person's life. The guilt alone will kill me!). Before that I had never had unprotected penetration. Will oral pass on the virus? Does semen contain the virus?

How is transmission even possible? Only thing I can think of is sharing my electric trimmer with my roommates while in college.

The physician also said that I have to absolutely avoid:
* Sex
* Alcohol
* Contact sports

Please someone tell me it will be ok, or am I on a death sentence?

[fretboard]

Hey Eric,
Welcome to the forum.  That doctor of yours must not have come across very many ppl with HepC at all.  As flyinlynn stated, kick that dude to the curb, my words, not hers!!  If you see a Gastro and he is equally an idiot and scares you to no end, find a new one.  Look in your area for a Heptologist, could be there's one covered through your insurance carrier.  Personally, if I were you I wouldn't tell anyone about you being infected with HepC except for your g/f and ask her to keep it secret for now till you learn more about it.  HepC carries a huge stigma with it and ppl may gossip about you and it doesn't feel very good either.  I speak from experience.  You'll be fine, Eric, the treatment now is very effective and you don't have very many side effects either.  I finished Harvoni on 8/24/16 and I'm hoping to be cured, I will test in two more months.  Harvoni, was a walk in the park compared to that old inter *fear* on, lol.  Interferon is some scary sht!!  good luck to you!

http://www.medhelp.org/posts/Hepatitis-C/GASTROENTEROLGY-VS-HEPTOLOGIST/show/96559#post_answer_header

[EricManicus21]

Thanks for the welcome. You cannot imagine how much better I feel reading everyone's responses here. Compared to yesterday, my mood has improved quite a bit and am no longer panicking. After all, if I've had it for years, I have managed to live a normal life. Come to think of it, during all those years I have never been in a situation where I may have infected someone else (besides unprotected sex with my girlfriend and sharing toothbrushes). I have never had accidental blood spills or shared needles.

Also, luckily I have avoided taking medicine/painkillers/advil etc. I believe those are bad for the liver for someone with HepC. So got a bit lucky there.

Unfortunately, I have been socially drinking quite a bit. Nowhere near an alcoholic level, but definitely to the point of waking up with hangovers often.

Best of luck to you with the treatment. I'll cross my fingers and hope for the best. You got this!

[flyinlynn]

Glad to help and you are getting a handle on your situation. Really the only medicine of concern is Acetaminophen aka Tylenol. Even Tylenol is fine as long as taken properly with less than 1200mg per day. The big concern is Tylenol is an ingredient in combo meds so always read labels to make sure you are not double dosing.

With having cirrhosis bleeding is a concern for me so actually I am recommended to take Tylenol as it does not have a bleeding risk.

It has been said that drinking with hep c is like pouring gasoline on a fire. I also drank which maybe why I now have cirrhosis but that took 30 years of being infected and occasional drinking to hangover. So

I am still willing to bet you don't have serious liver damage. Maybe some but not F4

[pitter]

I have known that I had this HC since 2007, been with my husband for 16 years, and he does not have it. We are careful about the toothbrushes etc., since my gums bleed sometimes.   I am careful if I do cut myself , i clean it up and bandage so that I don't leak any blood to infect anyone.   You will be okay. The newer meds are so much better. My heart goes out to the people who suffered with the older meds.,,but that is what they had then. I just started one of the newer ones, Zepatier. My ins. would not pay for Harvoni.  My viral load has always gone up and down too, I was being monitored yearly since 07. So far I have no real side effects from Zepatier...just a little spacey and tired and a few headaches. But they go away.  Zep is a 12 to 16 week treatment. (hopefully just 12) and it has a 92 to 97 % cure rate.  I am hoping for the best.  Best wishes to you, and as Lynn said , I would get a good hepatologist, or a infectious disease MD, or a gastroenterologist that is very familiar with Hep C. Don't worry yourself. Have your girlfriend get tested. She is probably alright.

[fretboard]

Hey pitter,
Hope you're doing well.  You're that much closer to being cured, good for you!!  

[EricManicus21]

That's fantastic. I am glad your husband hasn't been infected. My girlfriend lives in a different state and I believe this is a tough conversation to be had in person. I have no idea how she will take this. I will report back once I do talk to her.

I also will likely share with my best friend who lives near me. I am unsure if I will tell my family just yet. There's no point worrying them since they're out of state as well. I don't know if this is unfair to them though. Hard decisions... :(

Eric

[pitter]

thank you Fretboard! 24 days down so far!!!

[flyinlynn]

OK first up I would see a different doctor one who is more knowledgeable about hep c and hep c transmission.

High viral load has no relationship to severity of illness.

Length of infection for those who have been infected for 20 years it is said there is about  20% chance they will develop cirrhosis. I was infected for 37 years I was diagnosed with cirrhosis after I was infected for 30 years but there are many people who were infected as long as me with no liver damage.

Hep c is not generally considered to be an STD by the CDC. In fact the CDC does not recommend barrier protection for long term monogamous couples. The is a small risk of sexual transmission which increases in the presence HIV or if you have multiple sex partners or engage in rough sexual practices.

So no you don't have to avoid sex but you may consider using barrier protection if it would make you feel better about having sex. There are many here who have been with a partner in a long term relationship and one partner has hep c while the other does not.

Avoiding alcohol would be a good idea especially until you find out if you have liver damage.

I have never seen anyone be told to avoid contact sports before. Just if you do get cut be careful around others and bandage your injuries.

Hepatitis C is usually spread when blood from a person infected with the Hepatitis C virus enters the body of someone who is not infected: Today, most people become infected with the Hepatitis C virus by sharing needles or other equipment to inject drugs. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants.

People can become infected with the Hepatitis C virus during such activities as

    Sharing needles, syringes, or other equipment to inject drugs
    Needlestick injuries in health care settings
    Being born to a mother who has Hepatitis C

Less commonly, a person can also get Hepatitis C virus infection through

    Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
    Having sexual contact with a person infected with the Hepatitis C virus

Yes I assure you that you will be ok there are new treatments approved in the last few years that have excellent cure rates. Your treatment could be as simple as 1 pill a day for as few as 8 or 12 weeks and you will be cured.

Here is a great set of articles about the Hepatitis C diagnosis and treatment journey from MedHelp.org. I hope it helps you!
http://www.medhelp.org/hepatitis-c?section=articles

[EricManicus21]

Thanks so much for replying and sharing your knowledge!

> Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes

This just made me feel sick to my stomach. My girlfriend has used my toothbrush a few times by accident. I guess the good news is that it was very recent. Not sure if catching this early helps. I don't even know how to break the news to her or my family.

How did you find out about your infection (pardon if this is a personal question, feel free to ignore)? Was there an initial shock period? Have you been taking treatment?

Thank you for the link. It helped with as far as what to do next medically. I'll follow up with more labwork tomorrow and get an ultra sound. Then I'll schedule a meeting with a GE.

But what about psychologically? Does one just carry on? Back to work? Do I tell everyone I know? If i've had it for 6 years and didn't know...everything was so normal. However, now everything feels so abnormal. I feel like I am a walking virus, a ticking time bomb.

[flyinlynn]

Yes sharing personal items that could have blood on them is a risk but not a strong risk.

Even for a medical person who experiences an accidental needle stick  involving a patient with known hep c the risk of them getting infected is around 1.8%

Some people are able to beat hep c on their own (about 25% are able to successfully fight off hep c)

Really if I were to bet I believe your g/f does not have hep c but the only way to be sure is to get tested.

I donated blood just about the same time we had a physical at work. Work physical said I had elevated liver enzymes and blood back said I has tested positive for hep c antibodies. That was in the fall of 1990. I got all this in a letter on a Friday afternoon so couldn't even call someone to find out what this was all about till the following Monday. But the letter did say not to worry about it so I was just stuck for several weeks not knowing what was going on. This of course was before the internet

I gestimate I got hep c in 1978 or 1979. I was in the Army and got a tattoo in a less than best circumstances a guys apartment over a bar. Or my other guess is I did try IV drugs all of 3 times back then which I believe is the more likely cause.

I treated with the old medicines first time it was 3 shots a week of interferon monotherapy for 6 months. No effect on the virus. Several years later when they improves interferon and added a new medicine I was treated again for 6 months with one shot a week of interferon with ribavirin. By then they had a test for viral load my viral load was unchanged by treatment this is called being a null responder.

I treated again with Interferon ribavirin and a trial medicine but still nothing. I was having liver biopsies every 5 years with each one I had more and more liver damage. Finally in Jan 2008 I was diagnosed with liver cirrhosis. They came out with a new medicine also using interferon but as I had been a multiple treatment failure and had cirrhosis  my doctor would not let me try the new medicine as with my history it probably wouldn't work and with the cirrhosis might cause me to get very sick.

So from 2008 until late 2013 I was waiting with no treatment available and with liver cirrhosis likely getting worse every day. Then they released Sovaldi and a separate drug Olysio Nov/Dec 2013. I treated with Sovaldi and Olysio March to June 2014 and was not detected at the end of my 12 week treatment but 12 weeks later when retested in Sept 2014 I was found to have relapsed. Later it was determined for someone like me I should have treated for 24 weeks.....

Then Harvoni was approved in October 2014 I was prescribed Harvoni for 24 weeks and we later added ribavirin just incase I needed the extra help. I finished treatment in May 2015.

I have been cured since then.

So that's my story been there done that you could say....

Yes I remember feeling like being a walking biohazard. I work in a machine shop and sometimes we get cut at work and bleed. I  remember having to turn away from help when I had a bad cut for fear of contaminating my coworker and friend.

You don't have to tell anyone you don't want to it's up to you but sharing your burden with those closest to you can help you feel better.

All I can suggest is keep calm and carry on. It does get better, it will all work out, and you will be cured.

Hang in there
Lynn

[pitter]

happy for you Lynn!!!

[EricManicus21]

Thanks for sharing Lynn! Happy that you are cured!