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Avatar universal

Liver damage

Hi all,  I learned on 4/4 that I have hep C.  I'm 51, female, 1a, VL is over 5M & I could possibly have contracted this as long ago as 35 years or as recently as 20 years.  BX won't be until June.  To say I'm scared is a major understatement.  I've spent hours reading old posts and links to articles.  You all are a wealth of information. I'm just figuring out the abbreviations.  I'm so glad I happened across this site.  I'm ashamed and embarrassed to talk to anyone about this and I'm so scared.  I feel like this disease is gomna kick my butt because it hits me in so many areas where I already feel weak and susceptible.  I understand high viral count isn't supposed to be an indicator of liver damage.  To me, it stands to reason that high VL and duration of time that I've had this would have to play into it.  Am I right?  What I'm most concerned about are prescription drugs.  I take ambien, xanax, or temazepam every night and have for years.  I take phentermine during the day & have been for almost 10 years.  I can't seem to find any info online about these drugs & have no idea how to broach my doc with this info.  I'd really appreciate any info about harmful drugs and/or supplements.  I drink very moderately so I'm not too concerned about that or should I be? My biggest concerns are the above mentioned drugs, how long I've been taling them and the fact that I can't sleep without a pill.  BX is 2 months away.  I'm afraid I'm going to completely freak myself out worrying about this between now & then.  Thanks in advance for any help.
Char
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Avatar universal
Hey, Sorry to have taken so long to reply.  Was actually trying to last night but the cable kept going out.  Anyway, you have every reason to think that with good care you'll regress at least a stage, right?  In all my reading, here and countless other sites, I did run into that over and over.  I'm referring to people who had regressed by taking care of themselves and/or treatment  It's good to know that docs prescribe ambien and paxill since I'm taking ambien.  It's turning out to be a little more difficult than I'd thought it would be to find out which drugs do cause liver damage.  I can't tell if the warnings are standard or if they really can and do cause damage  In the interim, I've stopped my hormore replacement therapy which sucks cuz here comes the "flashes" again but I'd rather be safe than sorry..... I'm anxious for bx.  I've probably had it longer than 25 years and although I didn't party everyday I definitely had my moments.  Stupid question, I know, but was it hard at all to stop partying.  You're in treatment now, right?  Thanks for your welcome. Char
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Avatar universal
You're right!  Not worrying is easier said than done.  I wish I knew exactly how many years I've had this disease, as you do.  I understand that just because you've had it awhile doesn't necessarily mean you have a lot of damage but I can't help but think the longer I've had it, the more potential for damage.....No damage and level one inflamation sounds awesome as far as all that goes.  Good to hear that for you the waiting was more stressful than the treatment itself. Can I ask what your genotype is?  Good luck with your SVR! Char
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Avatar universal
You're right - the big marker for me is the bx.  You think even if it's a two, no immediate crisis?  There's a lot about this disease I don't know yet. I'm sure it's different for everybody but I wonder if there's a point in staging where most people do decide to treat?  I have no idea at this point.  Like I said, I have a lot to learn. Have you treated?  Thanks, Char
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Avatar universal
I'm agreeing with you -  this is the best site! Good luck with your bloodwork on 5/2.  I was hoping that my genotype would be 2a or b, like my husband's.  It wasn't but maybe yours will be.  I'm glad to hear that your husband and son were negative.  All the best, Char
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Avatar universal
It's good to know I'm not the only one who felt/feels scared, emabarrassed and depressed.  A support group is a great idea.  I'll decide about treatment once I've had the biopsy.  In a perfect world, I'd have little to no liver damage and could wait until a far less scary treatment came along but we'll see.  I guess in a perfect world none of us would have this............
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Avatar universal
Good advice.  I'm trying not to assume the worst.  It's hard because everything you know doesn't seem to make sense with this disease.  It does seem that high viral counts would equal liver damage but I understand that's not necesarrily the case.  Yep, I'm having a biopsy in late May, early June so then I'll know for sure.  Thank God it is a slow moving virus as you said.  You take care too.
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Avatar universal
It's good to hear positive news like yours.  So, you were diagnosed in 1995 and it sounds like you're in treatment now?  Glad you were feeling good up until treatment anyway.  How much longer to go? I wish you the best with it.  Char
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Avatar universal
I read your post "Scared" I also feel very lucky to have stumbled across this site.  You'll probably be getting your results soon.  I'm keeping my fingers crossed for you that you don't have it.  Post when you find out.  Hugs, Char
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Avatar universal
Hi JIm, Thanks for commenting.  I'm going to discuss all the drugs, vitamins and supplements I take with my doc.  Maybe I'm wrong, hopefully I'm wrong but, I have a sneaking suspicion that he's not going to know a whole lot about specific drugs and supplements other than what we all know, tylenol, cholesterol lowering drugs, etc.  I'm thinking that perhaps I should find a good hepatologist as opposed to a GI doc.........
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Avatar universal
Wow! Thanks everyone for your responses and welcomes.  I sort of went into hibernation mode over the weekend and am just now reading all of your responses.  It's awesome to have this message board to ask questions and get support.  Thank you all again.
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Avatar universal
Thanks for your welcome.  I wish you the very best with your treatment. Congratulations on your son's wedding. That's gotta be exciting.  Talk to you soon, I hope. Char
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Avatar universal
I'm not sure if you're gonna get this response but here goes.  I discovered I have Hep C because my husband was diagnosed with it a year ago.  Almost in passing, his doc suggested that I be tested too.  At this point, I'd been online and read a lot about it.  I knew that it was rare for it to be passed through sexual contact so I didn't think I'd have it.  So, I didn't get tested until almost a year later and as it turns out I do have it, but not the same genotype.  He's a 2B and I'm a 1a which means, of course, that I didn't get it from him at all.  Thanks for asking, Char
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Avatar universal
Hi friole, Thank you for your welcome. I took your advice and googled all my meds with the words liver damage.  I was surprised that even HRT (estrogen & Progestin) can cause liver damage.  Don't know enough yet to know if all meds say that and I'm not sure that my doc is going to have all the answers to these questions.  I'm thinking I should try and find as much info myself as possible.  Thanks for the link to the janis 7 website.  Excellent site.  I'm glad to hear that your biposy was stage 1, grade 1, even though I'm not crystal clear on the relevance of the grade.  I know it means level of inflammation but exactly how it corresponds to the liver damage, I'm not sure.  It does sound to me that if you've had this disease for approx. 35 years, and liver damage is grade 1, that you're luckier than many.  Are you currently treating or finished?
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Avatar universal
Thanks for your welcome and your vote of encouragment.  I've read a lot of your posts and look forward to reading more.
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Avatar universal
Thanks for your welcome and for the heads up about the old doctor's office records indicating elevated AST and ALT.   You mentioned not drinking at all anymore.  I'm not a big drinker but I have to admit the idea of never going out with the girls again and having a few, not having a glass of wine with dinner, etc is tough for me.  It's do-able but I am having a hard time digesting that.  But, you did it and others did it and I'll be able to do it too.  As you said, I'm in it for the long haul now. Thanks for your reply.
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Avatar universal
What you said about taking a drug every night, needing a drug every night, simple but true.  This sleep thing is a real problem for me.  Possibly the self hynosis would work for me as well..... Something else you said that I think is so important is trying to relax and put things into perspective.  I'm understanding more and more the role stress plays in our lives and it's downright scary.  I've always been a "Type A" personality, lots of worrying and stressinig myself out, lots of control issues, etc.  In my old age here, I'm starting to learn how not to be so stressed all the time but I probably have a long way to go. Thanks for your words of support.  Have you undergone treatment?
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Avatar universal
Well it sounds like you really HAVE done your homework!  :)  THAT is going to be one of the things that helps you beat this disease you know :)  I really think we can get overly obsessed too but knowledge of all the "how to's" is so important.

You should realize that just having it for that long does NOT necessarily mean that your liver is Stage 4.  I am a stage 3 BUT I drank and drank and partied and drank for my entire life. I've supposedly had this for 25 years and during that whole time I didn't spend all that much time sober. I'm talking partying every day to excess. Not good for the old liver!

I wish I could undue but can't so now I just take as good care of it as I can and hope with treatment that at the MINIMUM I regress a stage in the progression you know?

Try not to freak out (although it's just about impossible isn't it) and realize - every BODY is different and you COULD still have hardly any damage!

Make sure to tell your doc all the meds you take.  The one's you mention well I'm on NOW (Ambien, Paxill) BECAUSE of this disease - so certainly they are not any banned list since the doc put me on them when I was first diagnosed!

Best of luck
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Avatar universal
SJL
Stay away from the Ambien.  Their is an active lawsuit going on against this drug right now. I had been taking it for at least 5-6 yrs., and did not really know what was going on. It promotes sleep walking & sleep eating. I would get up in the middle of the night & carry on conversations with my grandaughter. She would tell me the next morning. I also found many signs of eating in bed and did not remember any of this.

Tell your Doctor everything, all meds taken. Welcome to the forum & as many has said before me, their are many knowledgable people here, willing to share information. Just ask!

Sandy
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Avatar universal
Welcome - you came to the right place.  Research, and don't be scared and don't worry!  Easier to say than do!  I have had HCV about 23 years and had no damage and level 1 inflamation.  I decided to go ahead and treat while my odds of SVR are as good as they are going to get.  Just because you have had it awhile doesn't mean you have alot of damage.  You will find it is alot of hurry up and wait.  I found the waiting was much more stressful than the treating has been. Glad to have you with us!
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Avatar universal
You know it is scary how you can have this and not feel any pain or any of the symptoms I have read about.  I wonder how most people find out about it?   I just happened to have a yearly blood work and they found slightly positive numbers and redid the check and it still read that way.  My MD told me to wait but I don't want to.  I do better dealing with the facts.
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Avatar universal
you had good luck finding this site. it has saved me thousands and given me support and info to keep me aware of how to proceed with tx.
i think the big marker for you is the bx. if it is only one or two you do not an imediate crisis. in any case there are many options with this desease and more coming all the time. it is not a death sentence so try and relax.
also it is nothing to feel ASHAMED about? i got it doing herion in the 60's and do not feel ashamed. it was one bad choice and i am not like that now. 4 million people or 2% of the usa have been diognosed with hep c so you are not alone. keep pluged into this site as it can really be a blessing. welcome to our merry band as we proceed down the foggy tx. path.
bobby
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Avatar universal
This is the best site.  I love it when you all come together and help someone so scared.  I tested positive by my MD and have a appointment with my specialist May2 to have the blood work done.  I agree the first week I thought I was dying. I cried and appoligized to my husband and son.  SInce then they nave been tested and are neg.  I may have had it since 70 or since 80.  Nothing in between will do.  I am a female 55.  I know they make it sound the older you are the worse off you are but the people on this site give you the courage to go on and to be as calm as you can be.
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Avatar universal
Everything will be ok.  It is normal to feel scared, embarassed, and depressed upon diagnosis of hep c.  If you haven't looked into a support group in your area, I suggest you do.

As far as the xanax, I was prescribed that along with Restoril, for sleep, when I started treatment so your sleep medications shouldn't be a problem.  Currently, I have found that one tylenol pm works just as well.

Are you going to treat?
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86075 tn?1238115091
hi, I neglected to say that of course you should talk to your doc about drugs, etc, youre taking and want to take...with a lot of matters, docs do disagree though...some are more inclined to prescribe pills and such then others...(of course I'm talking about a person with hep c and not currently on treatment, it's a lot different when youre treating) I was just saying that while not on treatment, it just makes sense to keep your system as clean as possible since youre liver is the main filtering organ and most drugs are processed though it...
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