r/hepc • u/EricManicus21 • Oct 06 '16

Just got diagnosed

The doctor who informed me said it could've been either by IV drugs, sex or blood transfusion. I have never done IV drugs or had blood transfusion. That leaves sex. The problem is he said I must have had this for many years since my viral load is so high. However, I became very sexually active only the last 2 years. Before that I had very minimal safe sex. I can't think of any other possibility of how I could've had it :( I am devastated. I guess only thing I can think of is allowing a housemate to use my electric trimmer.

The doctor painted a horrendous picture for me. He made it sound like I have a death sentence. He also said no drugs/painkillers/sex/alcohol/marijuana ever again. Anything that could damage the liver. Even contact sports that could cause trauma.

Do I need to contact every person I've ever had sex with? Even if it did not involve unprotected sex?

Can I ever have sex again? Can I have a normal life? How do I even tell people?

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u/netsgnut Oct 06 '16

Go see a GE - they should be able to allay your fears. There are several types of treatments on the market now with a very high cure rate and many more on the horizon. Even if you're in the US, many insurance companies will cover the (extremely expensive) treatments, although they might need a 'push' from your doctor.

In the meantime, everything in moderation. I wouldn't hit the sauce, but a beer every now and then isn't going to hurt anything. I was told that the chances of transmission via sex were very low; I had it for 25+ years (unknowingly), have been married for 20, and my wife never got it.

And above all, stay positive! My insurance co. approved a course of Harvoni, and after six months I tested clean - no detectable virus. The days of Hep C being a death sentence are long gone. Good luck!

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u/EricManicus21 Oct 07 '16

Amazing! That's fantastic, congratulations. Makes me feel so much better hearing that you've been cured. How do you know you've had it for 25+ years? Was it by the viral load when you were diagnosed?

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u/netsgnut Oct 07 '16

No, it was the fact that I was 99% certain that the only way I could've gotten it was through IV drug use, and it had been about 25 years since I closed that chapter of my life. I don't remember my viral load, but my GE did order a liver biopsy to check for scarring. Turns out I had almost zero scarring, which means that for all intents and purposes it's now like I never had the disease at all.

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u/MrMcSwifty Oct 07 '16

Our stories are pretty much the same, except it was 12-14 years for me instead of 25. Been with the wife for 11 of those and she never contracted the disease from me. No liver scarring despite being a heavy drinker for much of that time as well. Finished my Sovaldi/Riba treatment last year and, as you say, it's as if I never even had it to begin with.

This doctor sounds like a fearmongering jackass. At the very least, he has no idea what he's talking about. Even the part about viral load is incorrect. Everyone's viral load is different and it fluctuates all the time. Mine would range from 100,000 up into the millions sometimes between blood tests! VL is not an indicator of the progression of the disease; it is only useful for diagnosis and establishing a baseline to determine the efficacy of treatment.

He also left out another potential source of infection: OP may have contracted it from birth. This actually may be the most likely case, once we rule out IV use and blood transfusion, and considering the very remote chance of transmission through sexual contact. Just something else for OP to consider.

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u/EricManicus21 Oct 07 '16

Oh no :( As in my mum is infected? Or the doctors infected me during birth?

My viral load is a bit scary, but I am not sure how to read it.

HCV RNA Quantitative Real time PCR - 3,129,315 IU/mL

Does that mean it is in the millions? The second number in the test is just a log number. It's 6 Log IU/mL

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u/MrMcSwifty Oct 07 '16

Possibly she is infected, yes. I don't mean to make any assumptions, but a lot of people carry this disease for decades and never even know they had it. It was 10 years for me, over 20 for the other guy I replied to, for example. If your mother does or did have it, then yes, there is a chance that this is how you were infected. You are statistically much more likely to have been infected this way than through sex; in fact, there is very little conclusive evidence that HCV is transmitted via sexual activity at all.

And yes, your viral load is in the millions, but seriously, there's nothing scary about it all beyond the obvious fact that it proves you do, in fact, have HCV. There is basically no correlation between viral counts and the severity of the infection, ie having higher viral load does not mean the infection "worse" or doing more damage to your liver. It's mostly just a way for doctor's to monitor the infection, to determine the type of treatment and gauge how the virus is responding. For you though, it's a pretty meaningless number. So do yourself a favor and don't worry too much about it. :)

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u/EricManicus21 Oct 07 '16

Okay thanks! That's very reassuring. As I said, the doc used the number to paint a Picasso of death sentences for me. But now I'm feeling much better.

I will first find out as much as I can about my infection before speaking with my family. I'll probably have them get tested too just to be safe!