Never again??

I went to the doctor on Tuesday for my regular "female" exam.  After talking with him about general things he said "oh,yeah, you know you tested positive for Hep C in 2004".  I almost fell out of the chair.  NO, I did not know that.  That is just not something that you ignore.  Anyway, I went back on Wednesday for lab work and contacted my general physician who also did some lab work.  I have an appointment with my general physician next Wednesday to go over results.  I have been completely consummed with this for the last 4 days.  I have reseached like MAD, cried, worried, all the normal reactions.  According to research, 1 in 2,000,000 blood transfusions after 1992 are exposed to Hep C.  I'm thinking that I must be the "1".  I was in a bad accident in 1999, my liver had a 9 inch laceration, so they gave me blood and packed it with plasma.  
Okay, so here is what I'm wondering.  I know everything says "NO ALCOHOL".  I really don't drink that much, but I do enjoy a glass of wine from time to time or a few beers while tailgating at football games or the NASCAR races in my hometown.  Does this mean that I should never, ever, ever have a glass of wine again, even if I'm clear of the virus?  I know this seems trivial, but I'm just trying to understand how much my lifestyle is going to change.  I don't do drugs, I don't have tatoos.  My piercings were done with brand new needles.  I saw them come out of the package.  Except maybe my first earholes which were done with a gun when I was 11.  I teach kindergarten and am finishing grad school in August.  I just don't know why....

[jmjm530]

Sun says:oh,yeah, you know you tested positive for Hep C in 2004"
------------------
Unbelieveable but not surprising.

First step of course -- especially in this case -- is to see another doctor. Best choice would be a liver specialist who are called hepatologists and are generally found at your larger, teaching hospitals.

He'll probably order more tests, possibly a liver biopsy (done outpatient -- no hospital stay), and then sit down and explain and discuss your options.

Hep C is generally a very slow moving disease and while some are recommended to treat right away, many are told to wait for newer, better drugs.

I was allowed to drink 2-3 drinks per week prior to my treatment and I'm allowed the same after my treatment. No drinking allowed during treatment. Some here and some doctor will tell you never to drink but all I can relate is what two well-known liver specialists told me.

As far as knowing "why", many of us don't. Doesn't really matter how you got it anyway, better to focus on what to do.

You're probably in shock now -- most are when they first hear -- but as you learn more things will be put in perspective.

Other sites to visit are "Janis and Friends" and "Projects In Knowledge" which you can Google easily.

Back to the lifestyle thing, you will probably want to lead a liver healthy lifestyle -- eat well, no heavy drinking, exercise, keep a good weight, and of course have your conditioned and monitored by a liver specialist. Other than that, most do not have any activity limitations.

Good luck.

-- Jim

[cuteus]

Wow! you are the second person I read was not told by her physician that she was hep c positive for a few yrs after the test, what are these drs thinking??? I would have really raged at this dr if he was my caregiver!

as for alcohol, it really depends on your state of liver damage, if you are at o, or one, an ocassional drink should not make a big difference, but I would not chance it as long as I was hep c positive. You need a biopsy to see how much damage the virus has done.
After I was done with tx, and tested negative for the virus, I treated myself to an occassional beer, margaritas or wine. Not everyday, but not rarely either. I was only a stage one in liver damage. Some feel that no alcohol ever is the way to go, but others feel as I do. Your choice, once you know how much damage you have.

[jmjm530]

You want to see how crazy and controversial this topic is? OK, here are two diametrically opposed opinions by well-respected doctors ON THE SAME WEBSITE :) As I said earlier, I've heard it both ways and decided my QOL would be better with a beer now and then as opposed to without.

Dr. Dieterich says on drinking after one is non-detectible:
"...What is usually considered safe is 1-2 glasses (per day)..."
http://www.thebody.com/Forums/AIDS/Hepatitis/Archive/HepCtreat/Q154253.html

Dr. Shearer says on drinking after one is non-detecible:
"Alcohol and hepatitis C do NOT mix, period! "
http://www.thebody.com/Forums/AIDS/Resistance/Archive/general/Q169129.html

You will find similar opposing views among doctors as to drinking before being treated as well. Not surprising then that you will not get a consensus among the folks here :)

Cheers,

-- Jim

[SouthernSunshine]

Thanks for all your imput. I can see that drinking is going to be something that many people have many opinions about and that I'm doing to have to make a decision one way or another.  But, correct me if I'm wrong, absolutely NO drinking during treatment. And treatment length will vary depending on the genotype and my body's response to the meds.  Does that sound right?

[Mommy Too]

I am glad to read that other members of this formum are not quite as reactive as I am and were able to muster good advise.

They only thing I keep wondering is whether or not your doctor was alive when you left the office.  I want to punch him/her in the jaw!

Kathy

[Forseegood]

Once again, I agree with Kalio on this, if there *is* a debate on drinking with a hep c diagnosis...if the docs and researchers are debating on this....whether an occasional drink with hep c is okay... then why risk it??? Is an occasional beer that important to anyone??

I could see *maybe* risking it if the vast majority of docs said it was okay to drink an occasional drink...and only one or two said it was not okay.  But if you do some researching, it's the other way around...most docs say *don't drink* with this diagnosis, any regular drinking at all...it's not okay...

Yeah, my doc said, say, if you wanted to drink one glass of champange on New Years Eve, and one drink on your birthday, that would prob be okay, BUT NO REGULAR DRINKING WITH HEP C. I just don't see that it's worth the risk, this disease ain't playing around...why play around with it?

If youre already finished with treatment - and your SVR, then that's another pot of fish...with debate there too, lol.

[SouthernSunshine]

You know, I was really in shock.  He has been so slack over the past 8 years or so.  When I first started going to him he was really good and took time with patients, but now he has just gotten really cocky.  He still calls me by my first name, after 12 years of correcting him.  Anyway, he said he told me, but he ran the test in July of 2004 and I only saw him once after for another problem which he just dismissed and gave me some antibiotics for.  It isn't worth arguing about.  I know he didn't tell me...it is a he said/she said issue that I'm not getting involved in.  I'm just finding another doctor.  He ran tests but couldn't see me until July 27th.  I called my regular doctor the same day.  He saw me immediately, ran tests, requested a release of all medical records from the other doctor and will see me again on Wednesday.  From there he will send me to a specialist.  

I'm so glad that I found this site.  I know I'm really going to need lots of support.  I've told my family and my closest 3 friends.  Besides that, I think I'll wait until I know more and accept it myself.  I just keep telling myself to hope for the best and prepare for the worst.  I'm determined NOT to let this disease control my life.  Thank you all so much!!

Lynn

[Forseegood]

Oh, forgot to add, like Kalio says, sometimes we become really identified with a certain custom, like drinking with friends, socializing, NASCAR, whatever...

But once you stop doing it, you see that it's really no big deal, it's just a matter of getting used to it for most people, provided they don't have alcohol addiction problems...

You can relax and have fun and be comfortable around friends socializing, whatever, without it....a lemonade, or fizzy water with a twist, works just as well...and no one else really cares that much, unless they have a problem themselves...

[Forseegood]

I agree...

[jmjm530]

Sun says: But, correct me if I'm wrong, absolutely NO drinking during treatment.
-----------------------------------
No, you're not wrong. I think you'll find common agreement here, and in the medical community, that drinking during treatment is a bad idea.

-- Jim

[Forseegood]

Please don't take this wrong, cause we're bound to disagree once in awhile on something, no matter how much we like one another personally...but can you tell me how you think it even approaches being evenly mixed in how docs react to drinking with a hep c diagnosis?

I just don't see that...maybe I misinterpreted, but that's what I took away from your post...that's there's just a *debate* about this, I think it's more than that...

The vast majority of what I see is docs saying *don't drink* with a diagnosis of Hep C....that goes for all the main medical sites, etc...from what I see, it's odd where you see a doc or researcher say it is okay for any regular drinking with a hep c diagnosis...

[jmjm530]

Forsee says; most docs say *don't drink* with this diagnosis, any regular drinking at all...it's not okay...
--------------------------------------------------
"Most" docs that I talked to said the opposite.

[Forseegood]

Really? I just think that's odd...I sure don't want to right now, cause I'm working, but if I'm not mistaken, most every major medical site dealing hepatitis says the opposite...and the boards of hepatitis and the docs on those, etc. etc...

[jmjm530]

Some of our posts crossed, but I think the  posts you referenced stand better as I wrote them, and without charaterization. Don't believe anyone is using the word "regular" drinking but simply an occasional drink. As adults, all we can do is read the studies, talk to our doctors and then make up our own opinions. Doesn't make anyone wrong or right as far as I'm concerned. Personally, I had a few drinks a week for close to 40 years before treating, but I stopped smoking cigarettes 20 years ago, as well as exercising daily, plus watching my diet and weight.  That's how I weighed my risks and rewards.

-- Jim

[cuteus]

excellent approach! dump the trash quickly! and get a fresh bag!

like you would have dismissed such news should he have told you!

"oh yeah! now, i remember you mentioned I had a hep c positive test" "it must have slipped my mind, with the worry about the ear infection!" 'Silly me'!

ok, Now I am getting REACTIVE! GRRR!

[Forseegood]

From the CDC on Hepatitis
Drinking alcohol can make your liver disease worse.

Yahoo for Health on Hepatitis C
An important part of treatment for hepatitis C is how well you take care of yourself. You can feel better and prevent further damage to your liver by exercising and eating healthy foods, as well as by avoiding alcohol, illegal drugs, and certain medicines.

From Blue Cross
If you’ve been diagnosed with hepatitis C, your doctor has probably advised you to give up alcoholic beverages. For some people, this can be one of the most difficult lifestyle adjustments to make. But it’s also one of the most important.

Several studies have shown that among people with hepatitis C, regular drinkers have higher levels of virus than nondrinkers, according to Wen-Zhe Ho, M.D., director of retroviral research at the Children’s Hospital of Philadelphia. Studies also show that when people infected with the hepatitis C virus (HCV) stop drinking alcohol, levels of the virus decrease.

Now, for the first time, experts are discovering why. In an experiment Ho directed, researchers found that alcohol causes the hepatitis C virus to multiply in the liver. The findings, reported in 2003 in the journal Hepatology, show that alcohol increases the activity of a protein that triggers the virus to make new copies of itself. These new copies speed the progress of the infection and raise the risk of liver damage.

From Web MD
For people with hepatitis C, there may be no safe level of alcohol new research shows. While heavy drinkers have the most severe liver disease, even light or moderate drinkers put themselves at risk.

I could go on and on and on....I don't mean to be argumentative, but this issue is pretty important, especially for newcomers asking about it...

[lilmoma]

Oh by the way!!!!!!!!!!!!!!!!!!!!

Incredible,...........but unfortunatley, not unbelievable.

CUTEUOS:  Congratulations on your SVR!!!
I figured you might see it if I posted up top.

[NYgirl]

No alcohol to ME (an alcholic who just LOVES to drink) means NO alcohol UNLESS you want to destroy more of your liver unfortunately.

The alcohol really really magnifies the hepC effects BIG TIME.

Also when you begin to do the treatment they say that for every drink you have until your body metabolizes it out completely that the tx meds are not working and you can begin to replicate virus again.

Until (if) you have a biopsy you will find out how damaged your liver really is.  When I saw what I had done to my liver having this disease.....it instantly got rid of all of my desire to drink.  Not to say I don't think on a hot day today about having a beer but...I just dont because it's too important.

PS There are lots of people in here who have had transfusions and possibly got the disease that way. There are plenty of people who have NO idea how they got it at all.  It's not important how you got it - just that you know that you DO so you can take better care of your liver.

It's the ONLY one you have and you can't live without it.

[jmjm530]

Forsee says: "I could go on and on and on."
-------------------------------------------
I think we've finally reached common ground :)

In conclusion (on my end :) )-- got to get back to cleaning my post-tx pigstye while watching the World Cup on TV -- many here, including myself, have posted that their doctors allow them an occasional drink, so obviously the last word is not yet in. I think we have to give people credit here for making up their own minds after doing their own independent research and consulting their doctors. Anyone who makes a major decision on Hep C solely by listening to you or me probably needs a drink :)

-- Jim

[FlGuy]

In Post C5:

'And treatment length will vary depending on the genotype and my body's response to the meds. Does that sound right?'


Basically, yes.  Compliance to the med schedule is important. Try to get every shot - every pill on time.

[NYgirl]

ps you can hear it's ok to have one or two or three or five glasses of wine but...knowing that without hepc it causes cirrhosis - WITHOUT hepC the disease that greatly magnifies the damage...why would you THINK of having a drink?  I've never heard of ANY doctor saying it was ok to drink BEFORE OR DURING TREATMENT EVER.  And I really believe if they did they would be irresponsible.


Since everything in here is a personal decision I would think of it this way - if you were diagnosed with lung cancer would you smoke?  Same difference.


(And I"m a smoker...and a drinker and I find it all dreadful but what can you do)

Sorry this happened to you. But you found the right place. :)

[Forseegood]

Please counter my post if  you'd like, cause I don't want to sound like one of those people that needs to have the last word on something, believe it or not, I try not to be like that...

But with all this vast info and studies showing the possible danger of drinking, even moderately, with this diagnosis, what I can't understand....

is even if there was a margin of error with all this vast amount of research....why would anybody take the risk? is occasional drinking worth it? with this diagnosis?

That's what I can't understand...of course we're all adults, and as as such, we can do what we ever we feel is best...have a great weekend Jim, and everybody else too...youre SVR anyway, and of that I'm really glad...

[NYgirl]

I completely and totally whole heartidly agree with you 100% and I don't understand how anyone could ever say that before or during it was ok. But of course it must really matter how desperately you WANT to drink to take the chance on causing MORE damage to your liver and risking it all just for a glass of wine.

It'd be like taking iron pills = we know why we CANT but some people might figure during anemia they need them = is it harming or causing good?

Not worth the chance to me at all.  I'll just eat fudgicles and ice cream instead. It's worked for me ;)

[Pdilly]

Welcome to the site.  Do come back. I am fairly new too.  I found out the end of March.  I cried and felt that I was going to cause my son and husband to die too.  That was obviously in the early days. Comming here has helped a great deal.  They also pointed me to other sites for other reading.  Between all the fantastic input here, reading and all the tests I have calmed down a great deal.  You will too.  HepC is very slow moving.  
The point about the kids with tatoos in a few years is something to think about.  It is so popular right now with the kids (and the older set too).

[jmjm530]

You're destroying my buzz.

Just kidding :) Hey, have a good weekend, and I do not take these types of discussions at all personally, unless they are made so, and you never do.

-- Jim

[Mister beagle bailey]

hey, how are you doing?  I feel like we haven't talked in awhile.  Any thing new with you?

Debby-- How are you doing?  Are your sxs getting better?

Beagle :)

[Mister beagle bailey]

You left out the gun (needle) that's how I got it.  I made sure I had my own ink, etc but never thought about the gun until my Dr brought it up to me.  How are you doing?  Saw your Friday night fight song Kim, thanks as always.

Beagle

[FlGuy]

All is well.  Haven't been to Hutch for a couple of weeks and not going this weekend.  It's where I recharge my batteries and miss the ocean, sites and sounds when I don't get there. Next week, for sure. Without the meds this is a new kind of weekend for you too.  Getting stronger each day, I hope.

[Mister beagle bailey]

Still not getting stronger but it's only been a few days, hope I start feeling better soon and my HGB starts to head north.
Is Hutch your second home?  I know what you mean about the ocean, I miss it too.

Beagle

[NYgirl]

I am so much looking forward to the weekend it's finally hot here in NY can you believe it?  No more cold cold wet rain?  YAY!

Even if I am dying tomorrow I will find the discs and fix that computer! I gave my daughter her brand new Dell laptop last night (wireless it's so smokin' hot) that she HAS to lend it to me so I can get on line this weekend anyway.

after all...she destroyed my DESKTOP in the first place LOL

I bet your hemo is going up now that you stopped the Riba (didn't you? I know you stopped the shots).  I can't wait to see what it is in a few weeks - Thal or NOT I bet you are gonna be signing in the sunshine my friend.

How does it feel to be SVR?  :)

[Mister beagle bailey]

Hey Deb, I'm not SVR yet have a way to go before I can declare victory.  Yes, I stopped the riba and I'll give my self a procrit shot tomorrow and I'll do my blood test in 2 weeks.

Glad your going to work on your PC this week end, if you get it up and running E-mail.  You could even borrow your daughter's.  LOL

Beagle

[doglover28]

Southern Sunshine,
That is awful about your doctor.  I was in shock when I found out that I have Hep.  I found out in April. However, the people in here have kept me sane.  You've come to the right place.  I was told early on that the initial shock will wear off, and it has.   I honestly thought I was going to have a nervous breakdown, until I found this place.  Hang in there and come back.

Hi Beagle,
You got Hep from the tattoo gun?  With all the young kids getting tattoos now, I bet there will be an even bigger epidemic in a few years.  That's scary.  I hope you start feeling better and stronger.

Pam

[doglover28]

Wow!!  That is pretty darn scary.  I see so many young people with tattoos now.

[beamishboy]

interesting thread..i was well-oiled when i got a tatoo-the ink was refilled midway from a big bottle of black ink!!! i wondered&worried(slightly,hey i was celebratin) at the time...Iron&Ink festival;probably 75 customers at any one time-imagine the possible tranfers of virus...!!  
         Strator&Dyce--- Hey yu guys doin O.K.?? i  haven't seen yur handles inthe mix....stop in for a visit,brief hello or bettr yet bring us up to date on all manner of stuff-latest insights,intriques,tales of adventure or youthful abandon..C'mon it's friday nite and i got 'no particular place to go'...Hope all is Well,CHEERS

[Mister beagle bailey]

This is really scary, I think in the next 10 years or so we are going to hear about many with Hep C from tatoos.  Heck, I'm worried about my sons as the have tatoos.
That was my point a few weeks ago when I opened a post about tatoos and how many kids are walking around with them.

Beagle

[SouthernSunshine]

Wow!  I never imagined my question would cause such controversy.  I am so appreciative for all of the honest answers.  Hearing what you all have to say has both calmed some of my fears about adapting to and living with the virus, but has also made me worry more about treatment.  UGH!  It really is scary stuff, huh?  And the comments about tatoos makes me want to start preaching to my brother, sister and other friends about getting tested.  I would hate for them to find out later in life after more damage has been done!!

[Kalio1]

It is all very overwheming in the beginning but as Pdilly says, it does get easier.

I hope you have better luck than I suggesting to people you know to get tested, I have been suprised by the resistance I have met doing that. People say " the place I go is clean" or " I dont have any risk factors" and whatever else they an think of! I try to explain that our govt. has not helped any by educating the public and expain that many people have it and don't know it, how many find out by accident or suprise when they try to get life or health insurance, but I find people do NOT want to believe that what happened to me could also happen to them.
I think it is that stigma again, people dont even want to be associated with the TEST.

[Algernon]

I didn't feel any better at all for at least 4-5 days.  Then only a tiny bit better the next few days.  Now, almost two weeks after TX, I feel MUCH better.

I swam during treatment (slowly, but regularly) but I used to run 3 miles very easily before treatment.  Yesterday, I tried to run on a treadmill.  I was feeling great so I thought I was ready for it.  I ran 38 SECONDS before I had to stop and just walk.  It's gonna take a while to really get "normal".

Take care, Alg.

[rifleman]

You people shock me!  Imagine! Drinking! Doing what you want with your own liver!  Lenin must be rolling around in his grave!  The taliban must be mortified!
Well, in any event, last year on this date, approx 8 hours from now, I was hunkered over the terlet puking my guts up from my first shot of peg. 8 hours from now THIS year I will be savoring a tall cold Sam Adams brown ale.  
DJL

[jmjm530]

Yes, it is so shocking that we probably should be discussing this on satellite Internet :) Glad to see you up and running! For those that don't know, Rifleman is one smart gun -- treated for 12 weeks and cleared. Took the least toxic reasonable path to SVR, given his genotype and other stats.


-- Jim

[Mister beagle bailey]

Thanks I thought I was losing it.  I'm looking forward to the day I feel better, it's just not getting here fast enough, you know what I mean. I have to say, I'm eating better so that's a good thing.  Your right it's going to take awhile to feek better.

Beagle

[jmjm530]

Yes, same page as I see it. Don't drink during treatment, and drink in light moderation after SVR if you so choose, like maybe 5 beers (or glasses of wine) a week, although for me that would be the exception not the rule.

The grey area seems to be light drinking after diagnosis and before treatment, or after an unsuccessful treatment.

In my case, I was dx a number of years before deciding to treat and my doctors said it was OK to drink in social moderation. First diagnosis (chronic persistent hepatitis) was almost 40 years ago, so I've been drinking socially for that long. The more specific Hep C diagnosis was much later and I continued to drink a beer now and then with my doctor's blessing.

I should add that one of my previous hepatologists told me to stop drinking when my stage 3 biopsy came in about three years ago, but that may have been because he thought I would treat right away. I suppose if treatment shortly follows diagnosis, then probably telling a patient not to drink is sensible.

I ended up switching doctors and delayed treatment for three years, while continuing to have a drink now and then with my doctor's blessing. I stopped drinking on my own about two months before deciding to treat. As to drinking after unsuccessful treatment -- hopefully never have to cross that bridge, so no comment on that.

Your Indian doctor is a wise man. Some focus on drinking when diet, cigarette smoking, etc, can perhaps have a more detrimental effect on the liver. In fact my NP told met that fatty liver can accelerate fibrosis more than the virus itself and fatty liver is often caused by being overweight. And of course there are other liver toxins for some of us, in my case certain herbs of an unknown origin which sent my enzymes sky high, delaying treatment almost a year.

Don't think it's necessary to mention this -- but some of us often do get misquoted here --  I am not in favor of anyone, nor do I suggest anyone with hepatitis drink after SVR. I just feel that as adults, a drink now and then is a reasonable decision, assuming you don't have a problem with alcohol and therefore are kidding yourself that you can drink socially.

So please, no one (and I'm not talking about you Chev) say JM says it's OK to drink if you have Hep C. What is accurate is that JM says it's OK for JM to drink :)

Thanks Chev for helping to wrap this subject up.

-- Jim