hep-c viral load 9 million have questions

[worrywortmom]

I was just recently diognoised with hep-c and my viral load is 9 million. I would like to here from people that have had that high of a load, and responed to treatment. Don't know what genotype yet. But my doctor said probably a genotype 1, given my past backround, and that with that high of a load I have a good chance of not responding. Could you please tell me how long it takes to get the results for the genotype test. Sonogram was neg and my liver emzyme was slightly elevated. If treatment doesn't work will the high levels of the virus cause liver damage sooner than if the levels were low? If all goes well with the rest of my blood tests i will start treatment in two months, I cant seem to get my mind off of this. But I'm trying to keep my spirits high.  I'm afraid to tell my work, dont know it they can get rid of me or not? Where does hipaa fit in. Can they tell other associates? I dont have much of a support system most of my family lives out of town and my husband just keeps saying its going to be alright. I dont want to here that, what if it isn't!
Cant talk to him about it he keeps telling me give it a rest. i have lots of questions and know answers, please help!

[willbb]

"my liver biopsy are perfect, no liver damage"
----------------------
I am wondering if it is the same Physician that interpreted your biopsy report that made this inane statement below.

"it doesn't bother you then don't bother it."

If so I would promptly seek another opinion as this is certainly not the approach by any doctor that is knowledgable about HCV and the treatment of such.

Best to you..
Will

[dontworry_behappy1]

Hi And Welcome.   You have had HCV for over 40 years and are confident that you have no liver damage.  Do you know about all the other diseases that you could get or may have due to HCV?   Take the time to post the following title to the forum if you really believe what your doctor told you.

"My doctor said if it doesn't bother you then don't bother it"

The members of this forum are talking from experience.  We know what can happen and it can seriously effect your future health.  Take the time and ask
why your doctors statement sends up a red flag.  You want to know what your doctor either doesn't know (common) or didn't tell you about hepatitis C?

[can-do-man]

First your posting to someone that has been long gone and from 2005, next your doctor could not be any more wrong. I would suggest you find a new doctor before you realize how wrong your doctor is...... Good luck

[Deelabtech]

I am a 57 year old female, I have had Hep C since I was 15.  My viral count is 17,000,000 and my liver biopsy are perfect, no liver damage.  I am geno type 1.  I have not done any treatment, because my liver and all my blood work is great.  My doctor said If it doesn't bother you then don't bother it.  I don't drink alcohol but once in a blue moon. 1 drink is like 7 to someone with Hep.  Get plenty of sleep and eat a low salt diet.  Don't do anything until the biopsy.  I had two children naturally and they both don't have the virus.  No one has every got it from me.  So it's not a death  sentence for sure.  Sometimes I think I really don't have it.  So good luck.

[cuteus]

even though he has not have a PCR test, which measures the amount of virus in the blood, the fact that he has lichen planus tells me that he is chronically infected.  He will need a PCR test, a test to determine what genotype he is, and a biopsy to see how much damage there is to the liver from the virus.
You can go to janis7hepc.com, and read on the virus. That site is a great resource for most questions that you have and will have.  
HCV is not a death sentence right away, It works slowly in the liver.  Get all the tests needed and then you and he can discuss options available. HCV is curable, according to some hepatologists.  I consider myself cured after treating last year.
take care

[angry spouse]

My husband was recently been diagnosed with lichen planus.  Then they tested him for hepatitis c and yesterday that came back positive.  What happens next?

[hepcgirl1950]

I've had genotype 1b for over 30 years and my viral load is 300,000, which is on the low side.  I've known I had it for over 15 years and stopped drinking back then.

Here in a small town in Michigan, the viral load takes about three business days, and the genotype no longer than 5 business days.  They are shipped to the Mayo clinic and the response comes electronically.  I pick my results up at the hospital.

The hardest part was getting someone to run the viral load, since our liver enzymes were in the normal range.  We had to kick and scream, push and batter our doctor to run the load, and then it was easier to get the genotype run.

I will start treatment on the 16th of December.  My sister started on the 16th of November.  Her load was close to 2,000,000.    She is not having any side effects.  Our doctor is a Hemetologist, and he feels that all the additional tests are a moot point because, no matter what, we will treat.  

Don't freak out - - just take care of yourself and get especially healthy for treatment.  Try to eat foods that have not been highly processed & with short lists of ingredients.  Get 10 hours of sleep a night.  Don't stress out.  Get medication for stress rather than experiencing it.

[sunspot]

Only your doc is happy with a 3 log drop in 4 weeks? It's time for you to get out the noisemakers and dance a jig. That is execellent news.
I'll keep you in my thoughts that you will be indetectable at 12 weeks and you are most definitly on your way to that goal.

Dana

Anyone heard from cougareyes?

[2irish]

congratulations!!!  that is really good news.   if it was 80,000 it would have been a 2 log drop...yours is WAY better. the best news you could get!  keep up the good work!!

[worrywortmom]

thanks for all your replies, it is wonderful to here such good news from everyone. you have all been blessed and i feel i will be to. i feel so much better thanks.

[worrywortmom]

does a high viral load mean that i have had it along time?

[Blakester]

My friend has a 3 yr old son named Blake.  3 months ago he was sent home from daycare sick and had a ring around his tounge. It went away but he has been sick off and on since.  Now 3 months later there are two rings and I recently found out that his grandfather, who died of liver failure, had Hepatitis C and wasn't really an alcoholic.  I don't really know anything about it and before I tell my friend that her 3 yr old might have Hep C, I wanted to know what someone else thinks.

Thanks.

[hepcnjcent]

Hi Everyone
I have been a silent reader on this site since April.  I am genotype 1b w/ a starting viral load of 8 million.  Started treatment on October 1st.  Just got  my 4 week PCR and I am at 7,000.  Doctor is very happy with these results.  ??????

[honey11]

Hey,,,Geno 1 here also,,,Beginning viral load 8.5 million. Finished tx last year in January,,,3month post pcr,,,negative,,,,,6 month post,,,,negative!  You can do this.  Take care of yourself,,,one day at a time,,,is all you need to get through.

[strator]

Welcome, this board is wonderful. The help and caring here has done wonders for my worries.
Speaking of worries- it can be pretty overwhelming with all the new info and facing all the 'whatifs, shouldI, didI,willI's.' I've heard it suggested to break things down, including worries. Don't let the stress of the disease or treatment if that's the case rent too much space in your head. Pick one thing to focus on in just an 'okay let's check the first thing on the list' attitude. It has helped me and believe me that is not how I attacked anything in my life before others began to teach me how to manage something like this. Don't jump ahead of yourself with things like telling work. Better you have a handle on it first. If and when that time comes, you'll be suprised how much confidence a little knowledge and support can give you. From your name it sounds like you would face anything for your children, right? Well that means you already have what it takes to face anything for you.
BTW- first thing to check of your list- you now do have a support system.
God Bless,
Don

[nyhepc]

one thing not all the general public knows is that we can get out bloodwork results directly from the lab....well, at least in NY. these are the routine CBC,etc, that are done locally. need to sign a release. i take mine over at 8am and go back at noon for results. the genotype is sent away, to CA i think, and took 10 days. it would be good to educate yourself on the various bloodtests (cbc and cmp especially)so you understand what the numbers mean.  some dr's offices get very possessive over their information, they figure we don't know how to interpret it. Surprise!!! we do.
welcome..you've stumbled on a wonderful place

lorrie

[debdeb47]

I don't think you should tell your employer anything, unless you are a nurse, or something.  If you decide to treat, then you can cross that bridge, as you'll feel terrible for awhile.  Anyone can be fired for any reason, unless you are able to claim it's a disablity discrimination, so why would they ever need to know?  There's a huge stigma and it's no one's business.  But that's just me.

[GoofyDad]

Hey did someone mention me? I ruz rust out rookin for a fwesh liver, rhuuurp!

I suppose I missed this thread earlier because I shyed away fom the 'wart' in the title. Nothing to do with you, worrywortmom, just an unfortunate situation arising from my one and only date with a high school cheerleader. Decorum prevents me from saying much more.

I think you had some questions about work. I see no need to tell anyone anything at this point - unless you're in a position where it might matter, like a surgeon or a dentist or something. But based on your comments I don't see that being the case.

If you reach a point where you're going to start treatment, you might consider saying something - but that's a discussion for another day.

Glad you found us - but I wish it were under better circumstances. If you happen to run across my post from last week poking fun at gals from Fresno for not wearing deodorant - well that was just a friendly joke with a friend here. Say, you're not French Canadian, are you? ;-)




  

[2irish]

i wish you all the luck in the world!  The Luck of the Irish, of course!  I know you will do fine, we will do it together.  Get some rest now, lass!  Will check in tomarrow..make sure you keep in touch.

[worrywortmom]

Im not 2irish, but i am irish too.lol thanks for your message, im happy to here that things are working out for you. you have been blessed. It is so nice to here that i have a chance. And now i will be able to lay my head down and rest. not knowing is the worst thing. wish me luck

[cuteus]

start making a list of things to ask your dr, and take it with you. Do not leave the office without understanding the answers. You can call your lab and ask how long the tests take to come back. If you do a biopsy, you can ask the MD how long before the results are in. Unfortunately, the bx results are usually given at the next dr's visit. So long to wait. As for the bloodwork, ask your dr to always write cc the patient, so that you get your own copy and don't have to rely on the dr's call. It is ultimately up to you whether to treat or learn to live with HCV. There is a nice list by tnguy(member here) on things to ask the dr, but I have it in my PC at work. Maybe someone else has it handy?

[worrywortmom]

Fresno ca, your right soon i will know to much! (information overload is what im suffering from now lol.) I dont know where my lab is being sent to but i will soon find out. Thanks for you information.

[hubbyandme]

Hello from another "worry wort."  My husband found out he had hepc a few months ago and just found out his VL is almost 10,000,000, so I had the same concerns as you.  He got his VL and genotype test results back in one week.  His genotype is 1b which is the hardest to treat.

His gastro seems very competent. I think he is pro-treatment, which if we decide to treat, I guess is a good thing.  He talked about treating sides, etc., which I hear is also good that he is willing to do so.  The thing that we thought was a little strange though was that he said my husband did not necessarily need a biopsy to treat, but he said that if his liver did not have a lot of damage that might prompt us to wait for newer meds coming down the pike, so we decided to get one.  Went for the consultation yesterday and scheduled for December 8.  Hoping for the best, but we think he's had this over 20 years, so not counting on it, although his gastro says it happens.

Yes, you are entitled to your medical records, although when I asked the gastro's nurse for blood test results, didn't seem like she was thrilled to give them to me.  My PPO never had a problem with this, so I didn't know what that was all about.

Good luck with everything.  It is scary at first, but as you can see, this board is great.  The people are very welcoming and provide a wealth of info, making this journey a lot easier (btw, thanks everyone!), so if you try not to worry so much, I'll try too!  And, if we treat, will keep you informed of progress, but I think that there are 1s that have cleared, even though the odds are not as good as 2s and 3s, and, who knows, you might just be one of those...you haven't had the test yet!

[worrywortmom]

i will keep in touch