hep-c viral load 9 million have questions

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!

[vegas777]

Hi there, my name is Beth but people on here call me the dip...First let's start off by saying, sorry you have this virus, but it is not as scary once you get to know all about the "bug" and have choices you can make...It's a very slow moving virus, some people, such as myself have had it for over 30 years and are still living a normal life, and even some without treating it with conventional drugs...

You didn't mention in your post that you had a biopsy?  This is very important in deciding when and if to treat...I have low liver damage and decided to wait for "more friendly" drugs to come along...I'm not saying you should do that, but once you know what your liver damage is you can make certain decisons...

Secondly - I too like you have not much support at home...I live with my husand and 2 cats and the cats are better listeners...It's hard when you don't have family close by and your spouse is not interested in the virus...But, this is a good place to come and talk about it, and there are other forums that are HCV support sites too...

Welcome, and if you need any "technical" help regarding treatment and side effects and the such I am sure someone more versed than I will help you out, if you need a hug call on me!

Welcome  -  Beth

[worrywortmom]

Unfortunetly, when i went to see the specialist my family doctor didnt have my blood test, viral load, sonogram ect,  which my red and white blood cells were normal, i was not anemic and didnt have hep a or b. just said that i had hep-c. I was very angry! He had plenty of time to send them.  My next appointment is in a month and that is when I guess i will find out my genotype. And hopefully do a byopsy. The specialist didnt want to take the time to answer my questions and that bothered me very much! What does he get payed for! Thank god for this forum!

[jmjm530]

Good thoughts from Vegas. If it turns out you're genotype 1 -- the hardest genotype to cure -- you probably want a biopsy or something similar before you make a treatment decision one way or the other.

Alternatives to biopsy is a test called Fibrosure and a device called Fibroscan. Fibroscan is only available in a few places, including Boston and I think Miami.

If it turns out you're a genotype 2 or 3 (easier to cure) then some doctors still recommend a biopsy but many will urge you to treat regardless.

In answer to your question regarding high viral load and liver damage. No, there is no correlation although the lower the load, the easier it is to treat. That said, viral load tends to move up and down on it's own, so it could be higher next year or it could be lower.

Since this is your first post, you should understand that there are no doctors here -- you will get a variety of different opinion --  and you shouldn't make any decisions on your treatment without first consulting your medical team.

[worrywortmom]

i have read a couple of forums and you guys have a lot of questions that i forgot to put on my forum. I am female, 46, menopausal, 150 lbs, half white and half spanish. smoker! no symptoms.

[cuteus]

Boy, do a gazillion questions flock our minds when diagnosed or what? Welcome to the best board online, no bias there, you are in for a lot of reading and WAITING. We all want answers yesterday and it kills us to wait for them. First, viral load(VL) has not been linked to high or low liver damage, it makes no difference in assessing damage in that organ. High VL sometimes clear faster than low VL. Once you know your genotype, geno 1 is present in the US about 70% of the time, and know your level of liver damage, you can make decissions. For now, you have to wait and read a lot on hep c.
here are some good ones to start
janis7hepc.com
projectsinknowledge.com
hcvadvocate.com or org
there are lots more, but start with these and your fear will ease as you learn more.

[jmjm530]

Based on your last post, logistics and finances permiting, I urge you to find a doctor you are comfortable with before starting treatment. Also, make sure you get your own copy of all your own medical records. That way you'll not only know what is going on but won't have to rely on the doctor's office to shuffle things for you. I understand your frustration that it's the "doctor's job". But unfortanaly these days, a lot of people don't do their jobs vey well.

-- Jim

[worrywortmom]

Thanks for your comment. I know that all of you wonderful people are not doctors because I'm getting some answers! lol. And i will not make any decisions unless i have discussed them with my doctor, could you please tell me how long it takes to get your blood work back for your genotype and how long it takes to get your biopsy back.

[vegas777]

I know you asked this question of Jim but I will answer too if you don't mind...I know my buddy Jim won't mind...

That all depends on where you live...I live in Canada and it took 4 months for me to find out viral load and then another 3 months to get the biopsy done and results back...I think one of the worse things about this is the waiting, now if you live in the States it will be a lot less time consuming...

*dippers*

[worrywortmom]

i didnt know that i could get copies of my medical records thanks for that info. I just hope my doctor will work with me.

[worrywortmom]

i do live in california, I hope that it doesnt take that long for me here.

[jmjm530]

Worry said previously: "I know that all of you wonderful people are not doctors because I'm getting some answers!"
---------------------------------------
LOL. With a great sense of humor like that, you gotta start hanging around. Just watch out for this character named "Goofy"  :)

Hopefully, someone knows how long it takes to get back a genotype test back. It's been so long since I've had mine. However, if you happen to know the name of the lab, you can always call them and ask. You can also call your doctor's office and ask the nurse if the results are in yet. Tell her you want to know *before* you see the doctor.

-- Jim

[worrywortmom]

thanks for your reply, and thanks for the information sites that you gave me. i definetly will do some reading. Also thanks for easing my mind and the viral load thing, you have given me hope and hope is all i have right now! God bless

[worrywortmom]

I would love to meet goofy. and as for you jmjm530, you have put a smile on my face! thats something i havent had since i was diognosed. thanks it really feels good to talk to people that are or have gone through what i am about to go through.

[worrywortmom]

does anyone have any replies on how to tell my work and can they get rid of me in the state of cal

[2irish]

hi, and welcome.  just wanted to put my 2 cents worth in...i am in week 7 out of 48 and know just how you feel.  it is never as bad as you imagine.  my viral load was first 17,000,000 then the day i started treatment it was well over 9,000,000.  after 4 weeks on treatment it was 1280.  i am anxious to see what my next test will reveal.  hang in there, you are getting lots of good advice.  by the way, i am 52 yr old female geno 1a.  you will never go wrong with goofyballdad and jim.  they are awesome and two of this forum's greatest assets.good luck, irish

[crushed]

on the genotype from my experience it's taken 1-2 weeks for any genetic type testing (VL, typing ect) normal bloodwork is usually only 1-2 days. Quest has been doing my testing and the gene labs go to Chantilly VA.

as far as work that may be a little of a case by case basis however i don't see how they could sever your employment, that imho would be discrimination. in my opinion it's probably a good idea to inform your employer although i doubt it's required. i do know that in NJ it was required that i be reported to the CDC and perhaps the state which didn't thrill me. i'm sure there are people here that have had more in depth dealings with the work issue but i informed my coworkers and employer which i would have had to do anyhow as i'm on medical leave.

[Forseegood]

Where are you at in CA? I'm in Los Angeles, more properly W. Hollywood, this place is so big it's like a bunch of little cities stuck together so I guess it's good to be more precise. I've never had any troubles getting labs, answers, etc. from docs or labs, but maybe that is so individual to the hospital and clinics, etc. that it doesn't really matter where you live... unless you live out in the boonies. I guess it's one of the only things to recommend city life, the fact that there is more access to good health care.

After all the reading you'll do, one day soon you'll wish for the day you didn't know so dang much about this disease!!!, he he he. And always remember, it's always worse in your head anyway, for most people. And for most people, once you go through the "period of adjustment" you just continue to put one foot in front of the other...once again, it's not as bad as you think.

[worrywortmom]

i will keep in touch

[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?

[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!

[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]

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.

[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

[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? ;-)




  

[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.

[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

[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

[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.

[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.  ??????

[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?

[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!!

[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?

[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.

[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.

[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?

[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