Viral load

Hi to all, I just found out that I have Hep C, my Dr says that I am 1A so I have Chronic HepC. I have seen people on here talk about viral loads. Does anyone know if Dr's normally test for that? My dr has said nothing to me about it, and I have gotten alot of blood work done. Is it a serious thing to know? I hope everyone has a good day!

[chellski]

welcome grvygrly! like kalio says it's important to get comfortable with alot of your bloodwork info.  i would assume your doctor would not suggest treatment until a biopsy is done.
it seems the info we all start with is our geno type, viral load, ast/alt, and our biopsy results.  during treatment you'll learn to watch other things like hgb, wbc, etc.
good luck with whatever you decide - keep in touch here - it's a most informative and friendly place!
michelle

[NYgirl]

From one "girl" to another "girl" welcome.

Please don't be intimidated by everything all at once.  You have lots of time to learn all the abbreviations we use and stuff.  The more time you spend reading on here and taking notes (I got a notebook at first) the better off you will be.

Knowledge of this disease and it's test really = power to fight it.

When you can read your own reports (always make sure to get them ASAP from the doctors) and understand the results it makes a BIG difference.  Nobody cares more about you than you!

But...remember the people in here are great and have NO problem helping with anything so just ASK.  The more you ask the more you know!

Best of luck with the disease.  It freaked us all out when we first found out - remember you aren't alone. Everything you are going through...we've been there too!

Debby aka nygirl

[HCA]

The 'alt' in the grvgirly post is of course fibrosis not alt.
F0- F1 indicates minimal-mild liver disease.
There is no urgency to treat.Monitor and treat with next generation drugs.

[NYgirl]

how could they know what grade or stage she is if she has not had a biopsy done yet?  that doesn't make sense.

Grvy if possible at all the best thing to do would be have a biopsy to find out where you stand in the course of the disease. Most likely you do have time to wait before you treat...but it would be better to be safe probably (just my opinion).

I found out I have the disease last year and am a 2/3 which isn't so great but I did get both of my kids tested (single mom here...raises hand and wishes she didn't) and they were negative - so I decided to treat ... FOR them.

That was my logic.  :)

I dont think F0-F1 could be fibrosis if she hasn't had any tests done about it yet - or have you?

[grvygirly]

Thanks to all of you. I think I have had it for 5-10 yrs. I am currently on medicaid but it runs out at the end of Feb. after that I will not have insurance so I dont know what Im going to do. Should I go ahead and ask to get a liver biopsy before Im unable to pay for it? My dr. said that the F0-F1 doesnt tell if I have any fibrosis, Im not sure what it means. Im just really confused. I really appreciate everyones help and understanding. Its a breath of fresh air. Jill

[cuteus]

yes!  get the biopsy while you have insurance by all means. insist on it. My first GI would not do it because my liver enzymes were in the 'normal' range. My second GI, a hepatologist, mentioned it to me on the first visit, "we'll schedule a biopsy(bx) to see where you are at" and that was it. You have to know where your liver is at.

[grvygirly]

First of all I want to say thank you to all of you it really means alot knowing that I am not alone and I have someone to talk to. I am 28 and yes a girl. My dr. said hes not going to do a biopsy right now and he doesnt think I should start therapy right now since I have small children to take care of. I found out I had this when I was pregnant I just had a baby on Dec.13,2005 and I have a 20 month old also. All my dr. told me was that my genotype is 1A and my Alt level is F0-F1. Im not sure what that means. It is very stressful and depressing also. My daughters have not been tested yet but I am going to have it done soon since now I know Ive had it for a while. Thats what I worry about the most, If I knew I had this I wouldnt of had children, I love them so much and I pray that I didnt give this to them. Thanks again for yalls support.  Jill

[bobbyullc]

PLEASE DO NOT PANIC. THERE ARE 4 MILLION PEOPLE IN THE US LIVING WITH HEP C AND IT IS CURABLE. IF YOU ARE ONLY 29 YO YOU MAY NOT HAVE SERIOUS LIVER DAMAGE YET AS IT USUALLY TAKES 20 TO 30 YEARS TO SHOW UP. HAVE A BIOPSY DONE AND IF YOUR DAMAGE IS MINIMAL YOU PROBABLY HAVE YEARS TO GO BEFORE MAKING A DECISION. THERE ARE NEW DRUGS IN DEVELOPMENT WE ARE ALL HOPING ARE GOING TO MAKE TREATMENT MUCH LESS TOXIC. MEANWHILE LIVE YOUR LIFE TO THE FULLEST AND DO NOT GIVE IN TO FEAR.
BOBBY

[GoofyDad]

The ALT you posted doesn't make much sense - at least I've never seen it expressed that way.

Please don't worry about your girls. Newer treatments for this disease are in the works and in the unlikely scenario that your kids would need to be treated the newer drugs will very likely be available in time. As mentioned, this disease progresses slowly.

If I were you, I would be interested in the bioposy before too long. It is pretty simple, very low risk, and will be very informative as to whether you need to woory about your Hep C in the near term.

Do you have any idea how long ago you might have contracted the disease? That would help give you a feel for where you stand.

Hang in there. After the initial shock, this becomes pretty manageable.  

[SnoWav]

The wonderful thing about not knowing you had the virus is you had some beautiful children.Once you have the I got the virus info then the world changes for you never to be the same again.I have had C for around 35 years and am greatful I diden't find out until 6 years ago, we had 5 beautiful kids and none have the bug if we had known then some of them might not have been born and that would have been more sad then any thing I can imagine. I ended the 48 week TX Jan 6th and not too worried if I clear or not it's all a part of my adventure.Aloha

[cao]

I'm sorry for your diagnosis, but glad you've found this forum.  I'm in my early 30s & for me one of the hardest parts of the diagnosis (after the shock & anger faded away) was feeling like I didn't have a community of people that I could share this experience with.  Medhelp's forum really helped me to feel less alone, especially during treatment.  Welcome:)

[cuteus]

or gravy? anyway, welcome aboard the train. SOme here are still riding, others have gotten off the SVR(sustained viral response) station, and others are waiting to get on.
I would do the biopsy now, to make sure the F0-F1 is correct. It is not a big deal, if done with ultrasound guidance and provides a lot of info on the liver tissue. You might want to scroll down to the thread titled
Web sites for good HCV information? - miked: 01/31/2006
where a list of very useful sites was posted, and bookmark them as a resource.
Someone wanted those children with you, that is why you are only finding out about HCV now. I found out when mine was 14. Now, at 16, she has her mom, free of HCV. I was a 1a, and had mild liver damage, but was not willing to live under the shadow of HCV.
Sometimes I wonder which one is worse, treatment(tx) or living with hcv daily? the latter was worse for me.
good luck

[can-do-man]

You have to know where your liver is at.
________________________________________________________________

OMG, you mean i could be setting on it? OPPS, never mind thats my brain....... I was going to have you pick a number between 1 and 28. But i guess not now... You ok today?

[Mister beagle bailey]

Hi and welcome, You will find much help here.  You should have a biopsy, it will give you much info.  There is alot of help out there to help pay for your meds, it has been posted many times here on the forum.  If anyone out there has the info and phone numbers please post for grvygirly.
I wish you much luck and will see if I can locate those number.

Stay well,

  The Beagle

[homrrr]

Hi.I received my biopsy results only today after 30+ years of 1a hcv.It turns out that I have 0 damage 0 fibrosis.So some are blessed with the opportunity to try and wait on the next gen. of treatments.My Dr. as well as yours,i`m sure will continue to monitor any changes in your condition.As you know by now you have found the perfect place to find out anything and everything you will ever need to get you through this.These folks are(understating)Great!!
Goodluck
Frank

[cquest]

Ok, I went to the doc yesterday, she says I need to be on some sort of med for my gallbladder to make it start contracting. She thinks then my stomach will also start contracting properly. If not, then we'll worry about it later...

Then she insisted I go back on the tx. Says my vl is so high, it's messing up everyting else cause my body is fighting too hard to try and control it...I guess that makes sense...I said what about the rash from hell and she says, we'll give you something, she keps saying 'we'll deal with it, don't worry, we'll get you thru this'...I forgot to ask about the mushy spot from the shot (I can't imagine 48 mushy spots) but I will ask the gastro doc...yes the same gastro doc I had to begin with...I figured this town is so small and the docs egos so large that if I go against them, they will drop me altogether.I have too close of a tie to the docs in this town because of working at the hospital...I can't afford to alienate any of them...if things don't work out, I'll go from there...I called the gastro doc and told them what this doc said and I'll wait and see what happens now...I don't know how this will play out but she's probably right, she says why wait till the virus damages me further? She says I have a better chance of clearing if my liver isn't damaged any further and other organs along with it...
Cin

[GoofyDad]

You have to know where your liver is at.
-----------------------------------------

These days I can usually locate mine with the sniff test!

Mom: Holy cr*p! Was that the dog?!?
L'il Goof: Naw - Just Dad's liver. Dog farts don't smell that bad.

[Mister beagle bailey]

Good morning,

No I have not seen magnum in a while,Hope he is well. I had know idea he was doing shots daily.  Hope he posts soon to let us know how he is.

How are you doing?  Have not seen you here in a few days.


      The Beagle

[grvygirly]

Thanks everyone, I am going to call my Dr. today and ask to get a liver biopsy. And if anyone could post those numbers that would be so great. Does it matter what state you live in? Thanks again for everyones support, I feel alot better now being able to actually talk to someone without me thinking there judging me. Jill

[NYgirl]

Yup as Bailey said the ONLY thing that worked for me was GOLD BOND--TRIPLE ACTION LOTION.  The "Rash from Hell" still drives me nuts when I don't put the lotion on every day. I put it on --- the rash goes away --- I forget to put it on. Ah laziness!

I'm so sorry for your news but it makes sense. Just so you know my doctor said the EXACT same thing "why wait to treat until you are worse...and it's harder to get rid of...and you are older" (oooh I didn't like that part I am not GETTING older I am getting YOUNGER ;-)

Let's all do it while we are still nice and "young".  :)

[cquest]

I have prescription stuff for rashes...been battling it for 40 years and nothing works except the strong stuff. That's been the problem...I finally got the rash under control a few years ago and it's hard for me to accept dealing with it again...I have a nickel allergy and had to change pots and pans, etc to get the rashes to go away...very bothersome situation...
Cin

[beamishboy]

Yeow!--let's see...last week we are wishing you happy birthday..this week:Good Luck,sympathys!.....tuff row to hoe Cin,i wish all the best,strength,courage& resolve--things you seem to have in abundance....Ugh,back to trx hell....((CIN)))-hey,your still a birthday girl!!!!!!

[cuteus]

it is 10 o'clock, do you know where your liver is?

when do the brain fog set in with you guys?

[Mister beagle bailey]

Thanks for the kind words and you to are a positive force here also.

Hope all is well,

   The Beagle

[friole]

grvygirl
Let me also welcome you to the forum.  I am glad you found out early in life that you have this disease.  I know it is scary, especially worrying if your children are infected, but you will all get through this.  I would also recommend the biopsy.  It is odd to me that they did the genotype test but not the test to determine viral load.  We all get copies of our labs.  We have found that sometimes the doctors gloss things over and that we can learn more about them ourselves on the net or in this forum.  It could be that your viral load is stated on the labs.  In any event, it could be very true that you have minimal liver damage and can wait for better drugs, but without the biopsy you just don't know.  Like Cuteus said, try to get that biopsy now while your medicaid is in effect.

cquest
Bad news or good news - I don't know.  I am glad they have a plan of action for the gall bladder, but you must be scared to death to think about treating again.  I know that 5 days ate your lunch.  I didn't remember about the mushy shot spot - I wonder what that was all about.  Didn't you go to another doctor in another town for a consult?  but you still want to treat locally--  I see your point, being in the medical field and not wanting to make waves there.  So how can you boost your immune system to begin treating -- sounds like you have ulta sensitive skin.  Sounds like we need to get in research mode to figure this one out.  My thoughts are with you, Cin
Kathy

[can-do-man]

Fog seems to lift here at 7

[cquest]

Yep, super sensitive system...probably why I have so many problems...but you're right, I just need to suck it up...
Cin

[cquest]

You guys are great! I know many of you all have had it much worse than I have all along but you still take time out for others. That's what it's all about I guess...I appriciate it, thanks! And yes, birthday week isn't over just yet!
Cin

[Magnum]

Been spending my life in bed for the most part. It's been a month now and gave blood yesteday. I will post results. Constant nausea doesn't allow me to be in any kind of mood to talk to or commisserate with friends. This is a very nasty treatment. Still 24mcg Infergen and 1200 Ribavirin daily. I don't know how much more I can take but I'm very determined, and very sick...

Magnum

[PKCO]

I see that everyone here is 'biopsy happy' at this forum. I always try to choose what I say carefully. I always imagine that someone who is newly diagnosed, scared,and confused is reading their first post on HCV. And by reading this thread any newbie would ascertain that a biopsy is absolutley necessary. Which it is not, and in many cases,  even inadvisable. I could give alot of reasons for not having a biopsy but here are a coupe to prove my point:

Known length of infection---If this is known and it is under 5 years, a biopsy would unneccesarily expose a patient to the known risks of a biopsy. Many docs feel this way and the list of those with this tx philosophy is growing.I had a guy in the next room have a major bleed when the doc knicked an artery during his biopsy. I was told later that he almost died. So there are very real risks.

Clinical signs of cirrhosis---What would be the point ? Not to mention it could result in a major bleed.

The patient is going to treat regardless of biopsy outcome----Again, what would be the point ?

I think a biopsy can be a very useful tool. Primarily, for diagnosis and prognosis in cases of various liver diseases.
And if you feel you must absolutely know what stage/grade your liver is then by all means have one. But to make a truly informed decision one must have ALL the facts.

PK

[Snookmiester]

I for one and alll for biopsy, and the necessity of a real, needle drawn biopsy over ANY marker or non ivasive test!!

The only way to accurately test and measure the staging and inflamtion of the liver is under a scope!!

EVERY, and I mean EVERY one of my lab panels where absolutely PERFECT.. The only thing out of wack, was ALT's.. Here I was 26 years old, and labs where perfect. tested positive for HCV, and Doc thought biopsy was not needed. Told me I was young, and more than likely got it from a tatto a few years prior. CT scan was also perfect, and showed nothing.. Wife and myself pushed for biopsy, and low and behold the life of this otherwise healthy young man was changed forever.. STAGE 3 fibrosis.. Actually staged as a 3, but with more research convinced myself that it was a high stage 2, borderline 3. From that diagnosis, can to find out that my mother also was infected, same geno, and that I was infected at birth.

Without that needle stick, who would have know? I have a better chance of walking out my front door and getting in a car accident in my front yard than I do of dying from biopsy. Plan on having another ASAP.. I want to know if tx had a histological effect on my liver, or if I'm scared for life so to speak..

[Mister beagle bailey]

Hi,

About the rash, use GOLD BOND--TRIPLE ACTION LOTION.  Try to get the green bottle it's extre strength and has helped many here on the forum, including me.

Good luck,


    The Beagle

[Magnum]

Thank you for your thoughts. I pray you will clear soon as well. This is something I chose to do to once and for all to get rid of this. The suffering is for a cause. I am unable to work at all now and that bothers me. I am extremely limited to physical labor and nothing looks good to me but my bed. Almost all foods and juices I love are now repulsive to me. I lost 12 lbs. The doctor has one more patient taking this dosage. He lost 30 lbs. Thanks again for your concearn and I will post the viral count next week...

Magnum