new member- HCV questions

Rae599, welcome to the forum!  I'm sorry you are faced with this disease.  Do you have any piercings or tatoos?  Those are other means of transmission.  Generally it takes 20-30 years for symptoms to appear after the initial exposure.  Can you think back to any event that could have exposed you to hep C?  It has been known to be transmitted sexually, but it is very rare.  It can be transmitted from an HCV infected mother to child at birth.  There are some cases where there is just no explanation.

Have you had a biopsy yet?  That is the best way to determine if the disease is chronic or chronic active.  Chronic would mean that you have been exposed to it in the past, but your immune system threw it off.  Chronic active means that it is still present and actively destroying your liver.

Yes, you could have been having symptoms of hep C at the time you thought you had Lyme disease, but I believe that they have a specific test for Lyme disease, do they not?

Usually the main symptom of HCV is unexplained fatigue.  I was diagnosed with hep C in '93, and the only times I've had strong smelling urine is when I don't drink enough water.  So you may want to get a urine test.

Is the specialist you are following up with a hepatologist?

We have some very supportive and knowledgeable people here, so I hope you will follow up on your diagnosis and keep posting.

Hugs,

Connie

Hi, thanks Hep93 and Cary for your replies!

I am only 26; the only things I can even think of were that I was born 3 months prematurely and I had a congenital heart defect that was fixed through surgery at 10 days old. It was, as heart surgeries go, fairly minor and the repair was done through my ribs so I do not think I received any blood transfusions. I do not have any tattoos but I did have a belly button piercing years ago when I was 18. I had a knee surgery nearly 5 years ago but again, did not receive blood. I really doubt that the instruments were inadequately sanitized with either the piercing nor knee surgery. It just frustrates me that I won't know when/ where/ how I got it...

I have not yet had a biopsy, just more blood work. I think my GI is wanting to see what the blood work shows before putting me through a biopsy, she seems hopeful that since I am young that I could have just had acute hepatitis and am done with it but still have antibodies.

My urine is frequently a dark color but it is sometimes clear/ cloudy as well (although much less often than it is dark). I realize that it's more likely that I'm dehydrated so I've been trying to drink more water but it's tough to make yourself drink when you're not thirsty. It just seems questionable that no matter how much water I seem to drink it still has the strong ammonia smell.

Cary, I did not address acute hepatitis.  However, I was told that chronic hepatitis is when you have the antibiody for it.  If one has acute hepatitis and the immune system throws it off, wouldn't that person still chronically test positive for hep C?  I apparently contracted hep B (probably around the same time as I got hep C) and never even knew I had it until blood tests were done.  I was told that I have the antibodies for it, meaning I had it but can never get it again or give it to anyone else.  However, the fact that I will always test positive for it would seem to imply that it is chronic.  That is where I was coming from, and based on facts I obtained at the time of diagnosis.  That was in '93 and much has changed since then, including the jargon.  However, I maintain that acute hep B or C that is thrown off will still show up in blood work, and such a person can not donate blood.  If I am misinformed about this, please reference credible material to the contrary.  I certainly would never want to mislead anyone.

I did mention a biopsy being the only way to really determine the extent of liver damage.  However, if there is a cancerous liver tumor, the diagnosis can be obtained through a specific liver study with contrast via a CT scan, and/or an MRI with gadalinium.  I had many of these when I was first diagnosed with liver cancer, and continue to have them about every 3 mos.  I only had a biopsy done again, of the left lobe only, at the time the right lobe was removed.  That biopsy revealed mild cirrhosis which was not seen with the '93 biopsy or in any of the scans or blood work.  You are correct that liver enzymes can be normal or only slightly elevated and there still be liver disease.  My levels, while usually chronically elevated somewhat, have never been alarmingly high--in fact, there are times when all but one have been normal.  Also, my alpha fetoprotein, a tumor marker, has never been very high although my cancerous tumor was immense.

Rae, there is another new member whose doctor is waiting to see what her bloodwork is like in 2 weeks before deciding what to do next.  It is possible that you were contaminated during your heart surgery, even if you did not have a transfusion.  Also, tatoo and piercing instruments may be "sterilized" in alcohol or other solutions, but if they are not autoclaved they will not be free from any possible hepatitis virus or HIV.  In the end, it doesn't matter so much how you contracted it (if you actually have), but that you do and must make some decisions about your health and treatment options.  Prior to 1992, there were no specific tests for hep C.

Hugs,

Connie

Post Edited (hep93) : 7/21/2008 10:07:56 PM (GMT-6)

Thanks again for your replies!

I have just felt so taken aback by having the positive antibody test that my first instinct is to try to figure out how I got HCV. I guess I'll just have to make peace with the fact that I won't be able to know for sure, as frustrating as that is! I'm really trying not to let it get me down, especially considering I don't even know if I have an active infection yet. It would be nice to have a diagnosis and reason for all the fatigue and cognitive issues I've been experiencing though I'm not sure this is any better than Lyme's or MS or lupus (all have been ruled out so far).

John, I read those on the CDC website too! I can definitely rule out having gotten it from snorting drugs of any kind; I've always been afraid of that whole thing (my mom had some issues with drugs when she was young, thankfully she got all of that straightened out before she had kids but I guess it's possible she could have contracted hepatitis from that time in her life). I don't know if either of my parents have ever been tested for hepC, although my dad had hepB in the spring of 1984 (he's a dentist and apparently got it from one of his patients) so we did all have to get shots for that. How silly I would feel if it turned out that I got it from a toothbrush or razor! It seems ridiculous but, unfortunately, I'm sure it's happened to more than one person.

rae599

Just a quick note to welcome you to the forum. I know learning about having any kind of liver disease is confusing, devasting, and frustating. Things will be clearer once you get the results of all your tests.

Good luck

Lucy

I just got my blood work results and apparently there is no measurable hepatitis C in my blood. My liver and kidney function are fine, I'm not anemic and I don't have celiac.

So I guess I was worried for nothing? I guess it just means I was exposed to HCV at some point in life but cleared it. I didn't get a chance to talk to my GI doctor but the receptionist said she didn't think I needed to come back in. I told her to call me if my doctor wanted me to come back for follow up.

Should I still be tested routinely or anything? This means that I can never give blood, correct?

Thanks to everyone for your support! I appreciate it very much and I wish the best for you all.