Aa
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
Char
Hi, and welcome. MOST IMPORTANTLY, don't panic, thats my job!!
I am 50, 1a, vl 2.9 million, and I know I contracted it prior to 78. My biopsy was good, not sure on the drugs, best course-stop as prudently as possible. You used to drink moderately. Now you don't take even one more drink if you love yourself and your family. Number one factor in advancing into active liver disease-alcohol. even moderate drinking raises your risk factor. that said, I drank like a fish before I found out about mine in 93 (OK, 2-3 pints of whiskey a week-is that a fish?), and again, my biopsy was good. Look back at all the old records of Dr. visits, and see if you had elevated liver enzymes - AST and ALT. If you had above normal levels, might indicate ongoing liver damage. Be patient, you don't have cancer, your in for the long haul, but even now, you can stop and smell the roses. and again, welcome.
I am 50, 1a, vl 2.9 million, and I know I contracted it prior to 78. My biopsy was good, not sure on the drugs, best course-stop as prudently as possible. You used to drink moderately. Now you don't take even one more drink if you love yourself and your family. Number one factor in advancing into active liver disease-alcohol. even moderate drinking raises your risk factor. that said, I drank like a fish before I found out about mine in 93 (OK, 2-3 pints of whiskey a week-is that a fish?), and again, my biopsy was good. Look back at all the old records of Dr. visits, and see if you had elevated liver enzymes - AST and ALT. If you had above normal levels, might indicate ongoing liver damage. Be patient, you don't have cancer, your in for the long haul, but even now, you can stop and smell the roses. and again, welcome.
Hello and welcome, try not to freak over this, Good that you have been reading. Just don't believe everything you read. Make a list of questions with you to your doctor and after your bx see whats best for you. Best of luck and come back now.
Fish doc says...(OK, 2-3 pints of whiskey a week-is that a fish?),..........Lord she doesn't even know what a fish is.
Fish doc says...(OK, 2-3 pints of whiskey a week-is that a fish?),..........Lord she doesn't even know what a fish is.
Welcome, sounds like you fit right in with the mix here. We were all pretty damn scared at first. The doctor of fish hit it on the head with the drinking. Even moderate drinking should be avoided with hep C. Why don't you sip the cool lemonaide while waiting for the biopsy. I am not sure about those meds either, but you might google the name of the med and liver damage and see what you come up with.
I too have probably been infected 35 years ago. Even so, my biopsy read stage 1, grade 1, so there is hope that yours too will be good. I am 58 yof - 57 when I decided to treat. For me, and many here, the dx (diagnosis) of hep C has meant a lifesyle change - not only a long journey into the unknown. If it weren't for my companions on this forum, it would be a long lonely journey indeed.
If you haven't already, check out the Janis 7 websight. It has a wealth of valuable information and is quite readable. I go back to it often for various references.
http://janis7hepc.com/
Read as much as you can, and ask lots of questions here. If you can't get a thread, just join in on one and ask your questions there. We are glad you are here.
friole
I too have probably been infected 35 years ago. Even so, my biopsy read stage 1, grade 1, so there is hope that yours too will be good. I am 58 yof - 57 when I decided to treat. For me, and many here, the dx (diagnosis) of hep C has meant a lifesyle change - not only a long journey into the unknown. If it weren't for my companions on this forum, it would be a long lonely journey indeed.
If you haven't already, check out the Janis 7 websight. It has a wealth of valuable information and is quite readable. I go back to it often for various references.
http://janis7hepc.com/
Read as much as you can, and ask lots of questions here. If you can't get a thread, just join in on one and ask your questions there. We are glad you are here.
friole
How did you find out you had hep-c? Was there another condition that brought on the need to check for hep-C? Everything you take goes through the liver. The best thing you can do is research the drugs you take for liver warning. There are certain drugs like colesterol lowering drugs that are extra hard on the liver. Even to much tylenol is not good. If you have read past post you know alcohol is the number one no no. You will know more when you get yourbx results. 2 months seems a little long for your appointment. Don't stress.
Ron
Ron
I'm new to this site also--similar stats--I'm 1a and my bx is stage 1 and grade 2 and I'm 52--likely same duration of the disease as you.
Like others mentioned, don't be scared and come to this site often. You will find immense support and people with an incredible sense of humor. They have so much information and are willing to share.
Regarding your meds--make certain your treating physician knows everything you are taking.
I haven't started tx yet--plan to start next month after my son's wedding.
You made a great step in finding this site.
Welcome.
Rose
Like others mentioned, don't be scared and come to this site often. You will find immense support and people with an incredible sense of humor. They have so much information and are willing to share.
Regarding your meds--make certain your treating physician knows everything you are taking.
I haven't started tx yet--plan to start next month after my son's wedding.
You made a great step in finding this site.
Welcome.
Rose
Hi, thought Fishdoc had some excellent advice, you used to be a moderate drinker...nix on that now, as far as the drugs, I can relate to you in that I've always had hormonal probs, probably exercerbated by the hep c, and they have affected my sleep a lot though the years...once I found out I had this, in 01 I think, I knew I couldn't rely on sleep meds unless it was an emergency...because as you well know, you take a drug every night, you'll need a drug every night, that simple...
it's very hard, I won't say it isn't, but I had to train my body to sleep on it's own...it took me weeks of messed up sleep...but it will eventually happen...now, say, if I can't sleep for like, 3 nights straight, I will take a really small dose of xanax, like a half of the lowest dose...then the next night I'll make sure I don't take anything, and it seems to train my body to sleep...I never take things consecutively cause I know I'll be in trouble in that my body will be trained to rely on the pills...of course, other people might have different takes on this, but this is my take...
what I found out was really helpful for the sleep and relaxation was self hynosis...sometimes, if I'm having a hard time dropping off, insomniacs know when that happens, youre lying there and you are wide awake...I listen on my ipod to a tape...you can get them really cheap as downloads on hypnosisdownloads.com there's one for insomnia and there's one for anxiety, both are really good, or find one you like on your own....I swear, they get your mind off that loop of going around and around about your problems and etc....
if you decide to treat depending on your biopsy outcome and doctor's advice, your own studying, etc...then you'll be able to rely on the sleep meds cause youre probably going to need them while youre treating, but like I said, the cleaner your system is while youre not treating, the better youre liver will like it...
also, while youre not treating, and as best you can while you treat, try to eat a good balanced diet with little sugar...and lots of veggies and fruits and grains, etc...when you treat I understand it's a lot harder to eat that way but one tries their best...also get some exercise, good for the circulation and your liver needs that, lastly, try, try not to freak out that much...I should talk cause I'm Momma Freak, ha ha! but I kinda make that my life's ambition right now, to try to relax and put things in perspective...
freaking out does not get you anywhere and usually the fear is always a lot worse then the cirumstance, it's a matter of getting used to the diagnosis and then just taking it from there on how youre going to approach it...there are many people here treating and they are invaluable at helping you through this...good luck to you, you'll be okay....this is not a death sentence by any means, to the vast majority of people who have this, I myself have had it well over 30 years...
it's very hard, I won't say it isn't, but I had to train my body to sleep on it's own...it took me weeks of messed up sleep...but it will eventually happen...now, say, if I can't sleep for like, 3 nights straight, I will take a really small dose of xanax, like a half of the lowest dose...then the next night I'll make sure I don't take anything, and it seems to train my body to sleep...I never take things consecutively cause I know I'll be in trouble in that my body will be trained to rely on the pills...of course, other people might have different takes on this, but this is my take...
what I found out was really helpful for the sleep and relaxation was self hynosis...sometimes, if I'm having a hard time dropping off, insomniacs know when that happens, youre lying there and you are wide awake...I listen on my ipod to a tape...you can get them really cheap as downloads on hypnosisdownloads.com there's one for insomnia and there's one for anxiety, both are really good, or find one you like on your own....I swear, they get your mind off that loop of going around and around about your problems and etc....
if you decide to treat depending on your biopsy outcome and doctor's advice, your own studying, etc...then you'll be able to rely on the sleep meds cause youre probably going to need them while youre treating, but like I said, the cleaner your system is while youre not treating, the better youre liver will like it...
also, while youre not treating, and as best you can while you treat, try to eat a good balanced diet with little sugar...and lots of veggies and fruits and grains, etc...when you treat I understand it's a lot harder to eat that way but one tries their best...also get some exercise, good for the circulation and your liver needs that, lastly, try, try not to freak out that much...I should talk cause I'm Momma Freak, ha ha! but I kinda make that my life's ambition right now, to try to relax and put things in perspective...
freaking out does not get you anywhere and usually the fear is always a lot worse then the cirumstance, it's a matter of getting used to the diagnosis and then just taking it from there on how youre going to approach it...there are many people here treating and they are invaluable at helping you through this...good luck to you, you'll be okay....this is not a death sentence by any means, to the vast majority of people who have this, I myself have had it well over 30 years...
Please read my thread "Scared". I posted it on I think the 18th. The people in here really helped me. I tested positive to the Hep C Antibody. I am waiting to see if I actually do have the virus and if so, what the viral load and genotype. I was on the verge of a nervous breakdown when I stumbled upon this site. Just try to hang in there.
By the way, is there another place all you kind people online to chat?
By the way, is there another place all you kind people online to chat?
No use trying to figure out what may or may not be.
As a geno 1, you probably need a biopsy anyway. A biopsy will tell you exactly how much damage you have or don't have. From there, the treat or not to treat decision becomes a lot easier.
Regarding the drugs mentioned, I'm not familiar with all, but certainly xanax and ambien are often prescribed for people on treatment. That said, it's always a good idea to discuss with your doctor ALL the drugs, vitamins and supplements you take. If you don't find him interested or knowledgeable, that tells you something right there. A good hepatologist (liver specialist) will want to go over these types of things with you.
All the best luck.
-- Jim
As a geno 1, you probably need a biopsy anyway. A biopsy will tell you exactly how much damage you have or don't have. From there, the treat or not to treat decision becomes a lot easier.
Regarding the drugs mentioned, I'm not familiar with all, but certainly xanax and ambien are often prescribed for people on treatment. That said, it's always a good idea to discuss with your doctor ALL the drugs, vitamins and supplements you take. If you don't find him interested or knowledgeable, that tells you something right there. A good hepatologist (liver specialist) will want to go over these types of things with you.
All the best luck.
-- Jim
hi, I go to live chat at the Janis and friends site, I'm there in the afternoons sometimes (I'm pacific time) and it's kind of lively, with lots of nice people, a lot of them treating...you'll like it I think, many many doglovers there also, wonder what makes animal loving so prevalent among hep c patients? kind hearts I guess...
Forseegood,
Thanks for the chat site info. I noticed too there are a lot of dog lovers.
I guess I won't get my results back this week. I went to the Doc on monday. I'll try to put it out of my head.
Thanks for the chat site info. I noticed too there are a lot of dog lovers.
I guess I won't get my results back this week. I went to the Doc on monday. I'll try to put it out of my head.
Hey Char.
My circumstance are pretty similar to yours. I freaked for about two days thinking it was life ending. That was in 1995. My counts have stayed stabil since, my vl has stayed low, I have felt great until I started the treatment and I still get a good day now and again. Don't let your emotions get the best of you my doctor says bacon will get us before the hep does 99% of the time. The drugs your currently taking should be cleared by your hep doctor though. Sounds like you have a tough time sleeping by the drugs listed. Good luck to you. Dale
My circumstance are pretty similar to yours. I freaked for about two days thinking it was life ending. That was in 1995. My counts have stayed stabil since, my vl has stayed low, I have felt great until I started the treatment and I still get a good day now and again. Don't let your emotions get the best of you my doctor says bacon will get us before the hep does 99% of the time. The drugs your currently taking should be cleared by your hep doctor though. Sounds like you have a tough time sleeping by the drugs listed. Good luck to you. Dale
I would never have known that I have the Hep C virus had I not gone for a physical. ALT was 48 (week later it was back down to 22). Anyway, makes me wonder how many people are walking around with Hep C and don't even know it. My Liver panels have always been normal when I have gotten my physical. If I had gotten it a week later, I still wouldn't know that I possibly have it. It's been a rollor coaster waiting...I guess it is for everyone.
sorry about that....I still don't know if I have it. Do know I have the antibody. Some nice folks in here told me there could be a 20% chance that my body kicked it on it's own. Whatever it is, it's taught me to count my blessings
sorry about that....I still don't know if I have it. Do know I have the antibody. Some nice folks in here told me there could be a 20% chance that my body kicked it on it's own. Whatever it is, it's taught me to count my blessings
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...
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?
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?
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.
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
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
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.
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!
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
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
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
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
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.
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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