Hep c positive?

[Laney30]

Good morning everyone. I'm still trying to get my thoughts together over this and for some reason I can't find some of the answers I'm looking for just by googling it so I found this place and thought I'd just ask here.
Yesterday I went to the doctor (I had some blood work done prior) and the results of my blood work came back. The doctor told me I was Hep c positive and showed me the results of my labs. He said my liver enzymes were 'perfect' but the hepatitis antibody count (I think that's what he said it was) was greater than 11. That was what confirmed me having hepatitis. So the first thing I asked was if I passed it to my son when I gave birth (he is 2 now) and my doc said it wasn't likely. But I've been reading things that say otherwise. I've also read that the antibody count is just showing that you have 'at one time' had the virus.
Some background: I am 30 years old, when I was a teenager I was wild and did drugs and I injected them from the time I was 17-22. So 8 years ago was the last time. So yes, I'm aware of the reason I have been infected at some point. My question is, since it's been that long and my enzymes are in such good shape, does that mean my body could have gotten rid of the virus on its own? If so will I always test positive like this? Also, I know the risk of passing it to baby during  birth is there but they're not sure of a lot of details about it (if someone knows more plz feel free to tell me) but if my body had gotten rid of it does that mean there was no chance of him getting it? I also breastfed him.
At the time I was pregnant I assumed (so dumb) that they tested for hep c when they did my blood work. I remember looking  at the paper they gave me that had a whole list of things they checked for and I remember seeing hepatitis but I guess looking back now, it could have been b instead of c, really not sure. So I thought I was fine. Obviously now, I'm not sure if I was tested then or not. I have also had blood work done from various other places and one for sure I know tested for hep c and I never got any bad news from them so once again, I assumed I was fine.
My doctor now is referring me to an infectious disease specialist for more testing so I know I will probably get all of the questions answered then but I'm losing it right now in fear for my son and myself.  Please if someone has any answers for me I'd love to hear from you. Please no one be rude, I am very much aware of the mistakes I have made in the past and I don't have time nor do I care about anyone's opinion. I just need answers please, thanks!

[gnatcatcher]

Hi, Laney --

This isn't a crisis for either you or your son. The specialist will get everything sorted out in plenty of time to prevent real problems. Most pregnant women with HCV (Hep C) don't pass it on to their babies, and your normal liver enzymes indicate very little damage.

There are two HCV tests. One just determines whether your immune system has ever encountered it (and therefore has developed antibodies to it). That test stays positive forever except in very rare cases. The other test determines how much virus is in your blood at the time the blood is drawn.

"Antibody count" is commonly called "viral load." You are entitled to a copy of your lab results; when you have them, see if the "greater than 11" part is just stating the limitation of the particular lab that did the HCV RNA PCR Quantitative test. Look for some wording like DETECTED or NOT DETECTED or UNDETECTED. Only if it says DETECTED do you still have active virus. Feel free to post the exact wording, since different labs use different wording, but we've probably seen them all by now.

I know it's hard not to lose sleep over a new diagnosis, but I think you will be very relieved when you see the specialist. HCV usually takes many years, even decades, to cause major damage; your son is only 2, so even if he has it, his liver will recover nicely, and your normal enzymes indicate your liver is in good shape. Today's cures are very effective and easy for most people.

I assure you that lots of people on these forums got HCV the same way you were exposed. It's been a very long time since anyone on these forums was rude to anyone for any reason whatsoever, and then the moderators dealt with that person promptly. So this is a safe place to ask all of your questions.

Best wishes,

Gnatty

[Laney30]

Ok, that does make me feel some better and I thank you for being kind. I guess I'm just so worried and paranoid of being judged over it that I just assume that's the type of response I would get.
I didn't get a copy of my blood work, I wish I would have now. My doctor told me they would call me with an appointment for the specialist but no one has called yet. This all just happened yesterday though so I'm not really sure how long it may take. Regardless, I go back to see my doctor on Monday so if I have to wait until then, I guess I will. He showed me on his computer what that labs said but I can't remember seeing anything about detected or not detected. Just the greater than 11 thing. Do you know how long it takes to get into a specialist like that? I live in a pretty small town right now but I know it's ate up with drugs here so there's probably plenty of patients being seen for the same thing. I should've asked more questions but I was kind of in shock and didn't know how to respond. I want to call him now and see what's happening but I know I'll probably be aggravating

[Mugwump]

From what you have said the test you most likely had was the qualitative test which picks up the virus at very low levels. To be sure the next tests are the most important ones in determining which course of action to take and include determining which genotype you have and the current viral load. FYI you are most likely to be infected with either genotype 1A or 1B as infections in the type 2 group are much less common in North America.

Do not be afraid if a follow up pcr quantitative test shows a viral load in the millions as this means very little as to how much damage the virus is currently doing.

HCV is a very slow acting infection and in an otherwise healthy individual it can stay active but not become debilitating for very many years.

If you have passed the virus on to your son then please do not go through the depression cycle many who have HCV can. We fully understand your fears and stress as can anyone who has lived through many years with this disease.

Everyone here can help walk you through the jargon and help you deal with this disease in a rational and caring way.

Most importantly; Do not let HCV rule your life with the stress and uncertainty.

All the best 
Eric

[gnatcatcher]

The being in shock and therefore speechless is very normal when getting a new diagnosis. No good medical professional would exhibit judging behavior (not that there aren't some doctors who would be better off in a different field).

Since you have to wait until Monday to see the regular doctor, you can use some of that time to figure out what questions you want to ask and write them down. That's something I've learned I need to do before seeing any doctor about anything.

One possible question is: Would the doctor please give you a printout of lab results every time you take some labs? You can say that it would help you absorb what the doctor is telling you if you can see the information again later. If you have to, remind the doctor that by law you are entitled to have a copy of your medical records.

You want to confirm whether you are just positive for HCV (Hep C) antibodies, or also for active virus. If you do have a viral load, ask:
1) what genotype you have (a number, possibly with a letter, like "1a");
2) whether the doctor thinks the infection is recent enough that your immune system might be able to clear it without medicine;
3) whether your son should get tested and, if so, how soon.

The doctor may say that the specialist will be the one to answer some of these questions. That's the opportunity to ask (if the specialist's office hasn't called before Monday) when you can expect to be called, and how far in advance the specialist tends to be booked.

Even in an urban area, hepatologists and infectious disease doctors (the specialists for HCV) are often booked up for a few months. If that turns out to be the case where you live, you can ask the person who calls to make the appointment if you can be put on the list to be called if someone cancels an earlier appointment.

Meanwhile, enjoy your son and the things you like to do -- the time will go faster that way.

You and your son are in my heart.

Gnatty

[Laney30]

Thank you so much for your help. I still haven't gotten a call so it's looking like it'll be Monday before I know anything. But I will definitely see about getting paperwork and get the ball rolling with all of this. You mentioned I may not need treatment if I had gotten the virus recently. Are they able to tell when you were infected? How recent would it need to be? I'm like 98% sure it had to have been sometime in 2009 or before but I guess it's possible to contract it from sex as well but I know that's probably not the case. It just sucks that once you get your life together and things are going great, that's the time your past comes back and drop kicks you in the throat!  thanks again, I'll update with my paperwork and more info Monday.

[Mugwump]

There is no way to know exactly when an individual was infected. However if you did share needles years ago then this is most likely the original route of infection.

All this does not matter in the real world. I have never seen anyone benefit from finding out how they were infected. Worrying about this aspect of HCV when you are first diagnosed can wind up becoming an obsession that makes a person lose focus. I know I did at first in 1993 when I was diagnosed.

Be kind to yourself and you will find that it is much easier to be kind to others.

Cheers
Eric

[gnatcatcher]

. . . You mentioned I may not need treatment if I had gotten the virus recently. Are they able to tell when you were infected? . . . .

Laney, as Eric says, it's unlikely your infection happened recently, and there's no way to be certain. I posed the question more as a way of giving your doctor the opportunity to explain more about HCV transmission (including your questions about the likelihood your son is infected). And it gives you a chance to figure out just how much your regular doctor knows about HCV: some internists/family doctors know a lot; others don't and figure their entire job is to run the two tests, then send the patient to the specialist. You mentioned you live in a pretty small town, and the doctor pointing out the greater than 11 but not some word like DETECTED or UNDETECTED made me wonder if there was any chance the doctor was mistaking a test sensitivity for a viral load. I apologize that my question caused you confusion.

All of us humans have skeletons in our closets. Peer pressure is tough to buck when we are young. I managed to avoid drugs and tattoos only because I was too risk-averse to try them, not because I was any wiser than others my age. The joke on me was that I got HCV anyway, most likely from the 1971 transfusions, but somehow. You didn't set out to infect yourself, any more than the surgeon set out to infect me. Nobody knew. You are innocent.

The current medicines are so effective that you are going to be able to put all of this behind you. You'll see the specialist; assuming you are infected, the specialist may run some other tests and will then prescribe the medicine suited to your HCV genotype; most likely the specialist's office will help obtain insurance approval. You'll take probably just one pill a day for probably 8 or 12 weeks. At the appropriate times (different doctors have different testing schedules), your enzymes and viral load will be measured. Chances are extremely high that the HCV will quickly become undetectable and will stay that way. If HCV is undetected 12 weeks after the end of treatment, you're considered cured; the doctor may run tests a few more times to make sure the cure sticks. These days, nearly everyone gets cured during the first treatment, and almost nobody relapses. Those few people who fail the first treatment get a different one.

Even though Eric and I had had HCV for decades before the really effective cures came along (therefore our livers had really taken a beating), our livers started getting better during treatment and have continued to get better. Your liver is still in great shape (those perfect liver enzyme results), so you can look forward to a long, healthy future.

Peace,
Gnatty

[Laney30]

Hey! I know I haven't posted in a while and I still don't have much useful information to share but I do have a question. I finally got into my appointment with the gastrointerologist, which was a joke! He didn't tell me anything different than my doctor. I have to go get more blood work and then go back to see him the end of the month which I'm assuming then will tell me type and all the other stuff you mentioned. What the doctor did tell me though was that unless I am in advanced stages or something that insurance would not cover the medicine!!!! So I'm just supposed to sit here and wait until I'm dying before I can get medicine?? I'm suppose to put my life on hold and not have anymore kids or anything while I wait to be dying? Please tell me there is a different way. Regardless of no having the proper blood work back I know I'm not in advanced stages because my enzymes were good and I feel great. Please tell me if I should get a second opinion after my blood work comes back or if there's any other way to get this medicine. I want it gone!!

[gnatcatcher]

Laney, if this gastroenterologist doesn't know how to go to bat for a hepatitis patient who wants to have more children, there are other ways to get the treatment that'll cure you. But first: Does the requisition form for the additional blood work include something with "fibro" in its name, such as "fibrosure"? Or are you also scheduled for either a fibroscan or a biopsy? Even though your liver enzymes are still normal, whichever of those other tests you take just MIGHT classify your fibrosis level high enough to satisfy your particular insurance company. A few years ago, most insurers would only treat people with cirrhosis (F4) or high-level fibrosis (F3), but more and more insurers have begun treating lower fibrosis levels, and many insurers will treat a woman of child-bearing age who wants to become pregnant even if her F score is low. The doctor prescribing your treatment needs to make sure the insurance company knows that you want more children.

Hepatitis specialists in large metropolitan areas know how to convince the insurers. Your gastroenterologist may not, so you might want to get free help from the Patient Advocate Foundation's Hepatitis C Careline:
http://hepatitisc.hcvadvocate.org/tag/patient-advocate-foundaton
https://hepatitisc.pafcareline.org
Others on this site have gotten help there.

Still others have appealed and appealed an insurance denial until it goes to outside review, where the denial gets overturned. Yet other options for some on this site have been getting the manufacturer to pay for nearly all of the medicine, or getting legitimate generics abroad. People here can supply the details if it comes to that.

So, do not despair. The Patient Advocate Foundation's Hepatitis C Careline can guide you on how to get the treatment approved and paid for. Hang in there!

Gnatty

[Laney30]

Thank you so much for all your help!!! I will up date with more info when I have it. I have no idea about the fibrosis level thing but I will be sure to ask! This is so much help!!