How did you find out?

[Ggirl]

I may have had this for 25 years without knowing.  I just had a blood test yesterday and I should know the results in about a week.  I was diagnosed with hep in 1982 but they never told me what kind.  No one ever said I would have it the rest of my life.  I always marked down hep on every physical questionaire, but not one doctor told me I should get tested for hep C.  I've had three surgeries and no one ever questioned my blood work.  I've had blood work that came back with elevated liver functions and not one doctor said.."hmmm I see you've had hep in the past, that was before we could test for C, you should get tested".  So I'm just a little surprised.  And if this disease is so common, why don't we have folks dropping dead left and right from liver failure?  I have no symptoms, feel great and had no idea my liver has been turning into mush for the last two and a half decades.  So how did everyone else find out they have this?  What are your stories?

[audreywald]

I really feel bad that Hep C carries a stigma. Most of the people I know realize that the risk to them is VERY low, but once in awhile you meet someone who looks scared to death. I will tell you how I handled that on a wicked day.

This was a few months ago when I started tx. I got a severe stomach pain and went to the ER in an ambulance.

Some young girl worked there, med student,  nurse, whatever - I could see she was scared. That is very offensive to me from someone who works in an ER. So she was removing my IV and I said "be careful - don't forget I have Hep C."

She put on an extra pair of gloves. I said, "would you like me to remove my bandage?"

She let me.

I got Hep C by shooting dope, and I do not blame myself. It was over 20 years ago. It was a different me. I REFUSE to be ashamed or apologize for this illness. Many people got this illness thru a transfusion or some other means they had no control over.

It is RARELY passed on from parnter to partner. Hep A is the really contagious hep.

I do not know how I got on my soapbox, but it just makes me feel so bad when we, on top of having this disease, have to worry about what people think or how they might react to us. It makes it a double burden.

[cindee]

Hey and welcome, I found out because I was extremely fatiiqued. I would come in from work and not even undress...shoes..nothing, and hit the sofa. I would sleep about 3 or 4 hours, get me a bowl of cereal, grab a quick shower maybe every other day and then back to bed I would go. Some mornings I would wake up and get half way ready for work, and I knew that was all the nenrgy I had left. I'd call in to work and get some one to cover me, and then call my biss @ home and she'd say "okay" and slam the phone down in my ear. (now her Mother has Hep C)but that's another story. Now my ex-boss calls to check on me!

Anyway a nurse who is a friend of my daughter would stop by and everytime I'd be asleep. So she finally talked me into going to the doctor she works for, and he did a simple bood test and "boom"...it was hep c geno 1A..viral load 6 million plus. So I did the combo tx (treatment). Yes the doctor told me I had it for 20 to 30 yrs. It just lays dorment and then it hits ya!

But let me tell ya this...I just found out on this forum a while back, that some people's bodies can fight it off, but then some can't. I hope your viral load is very low...or gone. Then you won't have to treat. Please keep us informed. If you have to treat...you've found the best family here, heck even if you don't have to treat...we'll still be here to answer any question you might have. Good luck, many prayers and lots of love, Cindee

[Amerabrit]

Hi and welcome:)
I found out last summer when I contracted Erlichia (tick borne Lyme disease), my PA noticed elevated liver enzyme levels and sent me to a GI for more tests.  I believe I had been recently infected as blood work the year before was normal and my viral load was low, AST/ALT off the charts. Biopsy showed no liver damage whatsoever.  My husband of 24 yrs is neg.   I believe I contracted the virus from either Manicure/pedicure (bleeding cuticles, or electrolysis (My Dr. is putting his money on the eltrolysis)I have no other high risk factors in my life.  Side effects of treatment are definitely manageable.  I, too am very active, horses, dogs and running my own business and I am doing all of it, although some days a bit slower, and I am more fatigued than normal, but nothing to really complain about.
My Dr. told me that any weakness in either body or mind will be exacerbated on treatment.  From what I've read here, that would appear to be true.
I told my best friends initially, but now tell anyone who is close to me, reactions have been supportive and encouraging.
I too am in my late forties.
I have found wonderful, kind and supportive people on this forum who can answer most questions you might have:).
Best of luck to you in your treatment choices.

[Tallblonde]

I'm a patient of the Cleveland Clinic, too.  I have some information to pass on to you about my experience there that might be helpful.  E-mail me privately if you're interested.

Susan

***@****

[BethUK]

I just happened to be walking along with my little girl and saw a hall where a blood donation session was going on.  By chance I decided to pop in and donate.  Two months later I got a letter saying I needed further tests as my blook showed I had been in contact with Hep C.  I got all the tests, biopsy etc. which confirmed my fears.  That was in 1997, and the treatments then were not an option -  success rates were really low.  I suffered five miserable years of worry until I was able to go on peg intron combo.  It was a strange year on tx, but bearable.   I cleared and I'm cured now!  It's a fantastic feeling.

[jonihs]

There's only a 2% chance of passing this disease sexually, and I think less than that for monogomous couples. Remember it has to be passed blood to blood. My family is all negative and we even have several people on here that did not pass it even during childbirth. When my husband tested neg., we asked how often he should be re-tested and what precautions to take. The Dr. told him if he hadn't got it by now, he probably never would. Don't share blade shavers, tooth brushes, hair brushes and I keep examining gloves w/ me in case I cut myself bad and need help getting band-aided up. it is a good idea to have your family tested, but I wouldn't stress waiting for results. Good luck and stick around this forum. I finished tx. yesterday, but not without the guide and support I found here.  Joni

[cuteus]

a rheumatologist finally decided to test for hep c in my case, when she couldn't find "classical symptoms" of arthritis.
Many yrs have gone by since infection, many specialists, medical procedures, etc and only last year was I tested.

[Ggirl]

A big fear I have now is if I am positive, have I infected my husband?  How do I tell him?  How many of you guys have infected a loved one?
My doc said if I am positive she will refer me to a liver expert.  Fortunately, I use the Cleveland Clinic which has some of the finest doctors in the world.
How bad is treatment?  Does it really knock you down?  I'm a very active individual and enjoy working out along with a lot of other physically challenging activities.  How will it affect my ability to function?  Thank god I quit drinking a long time ago and don't use any drugs or medications.  I am very healthy (except for this) and fit for my age - late forties.  I just can't believe this is happening.
How bad is the biopsy?  I'll get one asap if I'm positive.  Wanna get this taken care of.

[cuteus]

a very good point that I often like to  mention when people start quoting death stats from hep c as being low. I guess it keeps the disease low priority

[Plutonium-kid]

Hi & welcome to this forum,
I'm a male 58 yrs of age. I think I contracted  HCV in the late sixties or early 70's. Had sl. elevated (~50-55) ALT, AST off & on, for the past 20 yrs.
No Dr., has ever gone into SPECIFIC DETAILS of the lab results for me as well. I think at times that our physicians barely second glance our lab results.
I guess THIS LESSON will be ALWAYS REMEMBERED...THE HARD WAY!!!
Thank God, that I have fared well since efficient Tx was really  unavailable up until 2001. HCV rarely kills....~2-3% of patients die of liver failure. It's a SNEAKY-DISEASE that was barely understood until a decade ago, so we're FORTUNATE in a strange sort of way.
Be KNOWLEDGABLE, always ask QUESTIONS & don't take anything for GRANTED even when the EXPERTS SPEAK. Let us keep up this dialogue for thru it WE truly help ourselves & others!

[Plutonium-kid]

Hi & welcome to this forum,
I'm a male 58 yrs of age. I think I contracted  HCV in the late sixties or early 70's. Had sl. elevated (~50-55) ALT, AST off & on, for the past 20 yrs.
No Dr., has ever gone into SPECIFIC DETAILS of the lab results for me as well. I think at times that our physicians barely second glance our lab results.
I guess THIS LESSON will be ALWAYS REMEMBERED...THE HARD WAY!!!
Thank God, that I have fared well since efficient Tx was really  unavailable up until 2001. HCV rarely kills....~2-3% of patients die of liver failure. It's a SNEAKY-DISEASE that was barely understood until a decade ago, so we're FORTUNATE in a strange sort of way.
Be KNOWLEDGABLE, always ask QUESTIONS & don't take anything for GRANTED even when the EXPERTS SPEAK. Let us keep up this dialogue for thru it WE truly help ourselves & others!

[new-sojourn]

And as to we never read about it, well, Hep C is a 'junkie'& 'drunkie' disease.  So the immediate cause is usually listed.  Now, if I had dies that nite, the cause would have been 'hemmorging' or 'suddenly' or 'peacefully' b/c the testing wasn'r even thought about until 2wks after I would have been creamated and floatin' in the deep blue sea.

Would you list 'due to complications of hep C?'  Are you afraid to tell people if you are infected? Do you feel defensive?  Well, I'm sure loved ones would like to keep your secrets too.

[honey1616]

The questions you are asking so much remind me of myself and everyone else that finds this forum.  How we all found out we had hep c just seem to be almost the same stories. We all just stumble across it one day and our whole life changes. None of us are positive how long we have had it...all we can do is make the best guess.  You have found a great place for support as there is alot of caring people here! Good luck and come here often.  All of our stories help one another!

New....I have to honestly say when I read your story....It makes me feel stronger that I will get through this!  And you are so right about if we did die from this disease...what would be listed on our death certificate.  

[Plutonium-kid]

I guess on our Death Certif. the cause of DEATH would be listed as of:

MYSTERIOUS CIRCUMSTANCES....lol....(: ....(:....lol!!!
                     OR
DIED IN VAIN....ha....ha....haha.....
                     OR as an
EXPERIMENTAL (SCIENCE) VICTIM.....<:)

Let's keep on LAUGHING :)<:)<:).. for that keeps us SANE!!

[honey1616]

hahaha Good one...You are right though...We have to keep laughing and I do feel like a guinea pig at times on this tx LOL  Someone said here not too long ago that its like a "**** shoot" and soooo true!

[Plutonium-kid]

Let US HOPE we aren't/weren't the DICE....~~~.....lol.....~~~~.
Since I expect to joke with you in another 20-50 years!

[Indiana]

I have probably had this for 30+ years. It doesn't matter anymore because I elected to trest and I am CURED.
This disease is the most under-reported emidemic that I have ever seen. 4 million are infected in the US alone.......170 million worldwide. 8,000 to 10,000 die in the US every year from this. That number is expected to TRIPLE by 2010. It is the LEADING cause of liver transplant.
This is NOT something to be ignored.
It is suspected that many more actually die from this but are not reported as such. If smeone walks out in front of a bus because they have "Brain Fog" caused by HCV then how is that reported?.......not as an HCV death. If someone has heart problems and has a heart attack due to Hcv complications....how are they reported?......simply as a heart attack.
This epidemic is under-reported for many reasons....mostly political. If they were to really admit the truth, they would have to admit responsibility for the indections from the national blood supply before the testing was possible in the early 90's. That is the biggest one.......there are other things in the mix too. All would mean that the governmant might have to absorb the cost of treatment for this for many people. It is VERY expensive.
But people ARE dyng. Just look back through the threads here. We are only a few hundred people at most.....and I have seen at least 3 people talkin about relatives who have died from this. And there are many more who speak of their various problems relating to HCV. And we are just a small group.
Sure....it is slow moving....MAYBE you can live with it......

    DO YOU FEEL LUCKY  ???????????

[new-sojourn]

Its the same old story.  I wasn't even tested for hep c until 2wks after I almost dies when out of the blue I staarted throwing up blood.  (Esphogal varicies).  The bleeding was nearly unstoppable (platletts so low, almost none).  My liver failed and I went into a coma.

I, too, always stated I had hep-college living in the '60's, so assumed it was A.  Was tested in late 80's & was told it was B-but no tattoes or needlework.  I was yuppie by then and did not fit the profiles.  

B/I also clearly stated that I had transfusions of blood products during '67, emer c-sec '79 & '85.

I was in therepy for severe depression for 6 yrs, got hooked on 'legal drugs' and good wine.  Went thru Camp Betty & they didn't catch it.  I had cat scans, thought I was losing my mind.  Put down to menopause, divorce, teenagers.

So, I had to die, go thru the light, come back, do treatment, clear in 18days and its 2 yrs later.  Still clear.  2b.-24wks peg-inferon & riba.

If I wasn't so grateful for life itself, I would be so mad @ what I was robbed of.  B/it explains alot & I'm finding that so called lost opportunities do come along again.

No matter how good you think you feel now, you will feel 1000% better if you are successful.  To me, it literally is the difference between life and death.

[DebbieDo]

Your story sounds like mine......I am 52 and i got this when i was 19.......I never even thought it was a diease until last yr.....I did the same as you when i filled out paper work....i was really in the dark.  I never really was a drinker, so ths probably saved me...I have mild fibrous, and a low viral load to begin with.  Very important to get a liver biopsy. This will tell the conditon of your liver......This is a great forum.  Lots of information here.....glad you found it.......
We will be interested to know how your Gi appt goes, and your biospy........Deb

[cghamm]

I donated blood in 1999, and they tested it for Hep-C antibodies. After politely asking me never to return to the blood bank, they told me I might want to have my Doc look into it. Prior to 1990, the blood supply was not tested for this virus, because the virus had not been isolated and no test was available. I too had elevated liver enzymes on blood tests in 1994. They retested me and it came back normal, so no big deal. Little did I know... I probably got this in 1973. I worked in a hospital operating room cleaning up after operations. We didn't know anything about universal precautions back then, and I came into contact with blood on a daily basis.  Now, thirty years later, my liver is shot, and I've never had the first symptom. The good news is, there's a lot you can do about it now. Had you been diagnosed even twenty years ago, there was no treatment. All you could have done was wait until a treatment came along, and drive yourself nuts worrrying about it. BTW, the reason people arent't dropping like flies from this is that it takes thirty-forty years for the liver damage to get bad enough to kill the organ. Lots of people die of other causes in the meantime.

If your test comes back positive for HCV-RNA, get theee to a Gastroenterologist posthaste! There will be lots of other tests and treatments. Come back here, the people on this forum know about them all and can help you make sense of it.

Keep your chin up and let us know what happens!
cghamm

[Martee]

I had no idea I had it either. I felt fine. I decided to go in for a routine physical because I hadn't in years. Blood tests showed that my liver enzymes were WAY high. Doctor sent me to a GI and after some questions he sent me for some more tests. It came back positive for hep c. I got a tattoo about l5 yrs. ago. I am assuming this is how I got it. Didn't have any other risk factors. But even though I felt fine, my liver biopsy revealed stage 3, grade 3. :(

[audreywald]

You cannot know that your liver is turning into mush without a liver biopsy. There are a number of questions you need answered before you know what is happening to your liver. The best idea for you now is to find a hep C expert doctor who will order the appropriate tests and give you his/her expert opinion as to how to proceed.

I found out when my frined was diagnosed, I realized I was high risk. I REQUESTED that my doc test me and it came back positive. They do NOT test for hep C as a matter of course, but they should.

Learn as much as you can and when you see a specialist, have questions prepared. Meanwhile, try not to panic - if you feel fine I do not think your liver is failing.