Newly diagnosed

I have just been diagnosed with Hep C and am totally devastated.  I was diagnosed by my family doctor after routine blood work at my physical exam.  They are trying to get me into a specialist but having a little difficulty since they are so busy.  Should I be getting into someone immediately, or is waiting a couple weeks a worry?  I've been trying to figure out where I got it, and all I can come up with is a stupid time in my life 30 plus years ago where I experimented with IV drug use, about 4 times.  At that same time I was living with an IV drug user for about a year.  I'm still a little confused about why after that long I would show no symptoms.  Does it just lay dormant in your body or what?

It's all very overwhelming and scary.  Reading some of the posts here has helped educate me and ease some of my fear, but some of them involving the treatment is scaring me to death!!!

Nancy

[jmjm530]

Sounds likely that you picked it up 30 years ago with the experimentation, no matter how short a period of time.

Your story or similar is shared by many here because Hep C can often exist for many, many years without symptons. Then, all of a sudden, it gets picked up with a routine or other type of test.

The good news is that Hep C is very treatable these days and the future looks even brighter with newer, better drugs on the horizon.

Your next step is to be properly evaluated by a liver specialist -- and preferably not a gastro. Liver specialists are called Hepatologists and they are generally more knowlegeable both about Hep C and it's treatment. They usually can be found at your larger, medical centers.

Sounds like you've had this a long time -- many here have -- and a few weeks, or even months shouldn't make much difference. More important is to see the right doctor and find out what exactly is going on and what are your options -- be it to treat now, or to wait for those bettter drugs. A lot will depend on the strain of Hepatitis you have (genotype) and perhaps a liver biopsy to see how much liver damage you have.

All the best,

-- Jim

[NancyPF]

Thanks so much for the input.  I live in a rural area and my doctor has me lined up with a gastro doctor.  Not even sure if there is a hepatologist in this area.  Should I go ahead and see the gastro doctor first and go from there?  

Do you know of a reason that I have no symptoms after 30 years?  I'm just trying to sort it all out.  I really know nothing about Hep C other than that it was contagious, until yesterday when I was diagnosed.  So any information is much appreciated.

Nancy

[jmjm530]

I don't want to minimize logistics -- and the following is a very general statement -- but my guess is that your average rural gastro is simply no match for a liver specialist (hepatologist) at a major medical center. Of course, he/she may be the exception, but why start off with a lot of half/misinformation. If a driving a couple of hours is feasible, personally I'd take the trip and get things done right the first time. If not, start with the gastro and presumably he will know what tests to order to get things started, such as a viral load test, and a genotype test among others. Not sure, however, you want a biopsy done (if required) by anyone other than someone who performs LOTS of them.

It's not uncommon not to have any symptons for a long time. In fact, many don't have noticeable symptons until they reach the advanced stage of cirrhosis, and even then, perhaps not in the early stages of cirrhosis. That said, some people may have symptons earlier, it varies.

It may turn out after all these years that you have hardly any liver damage. This often is the case. Or, it may turn out that you have significant liver damage. But we're really getting ahead of things because you really haven;'t been properly evaluated yet.

Forgot to ask. Did your family doctor do a viral load test (sometimes called a "PCR") or just an antibody test. 40 per cent of women clear the virus on thier own but still retain antibodies. If you fall into this somewhat lucky group, the you really don't even have Hep C and therefore nothing to treat or worry about. You could start out asking your current doc about what tests were used for the diagnosis.

-- Jim

[Deb_c430]

Stay calm,  we all panicked in the begining.  

Also start writting down all your questions in a little note book.   Really important to get the right tests done as soon as possible.  

best wishes and best of luck to you!  Loads of good info here,  but getting to a GI or Hepatologist soon is best bet!

Deb

[NancyPF]

Thanks, Jim and Deb, for your positive input.  I'm really trying very hard to stay positive here because I know how important it is.

The paperwork I have on the testing that was done is very minimal.  It says:

Hepatitis C Ab by Elisa:  26.00.  Note below says:

Reactive screening test indicates past or present HCV infection.  The signal/cut off ratio of = or >8 predicts a RIBA positivity of 95-98%.  Supplemental serologic testing not performed.

I thought I remembered reading about the PCM test, kind of like DNA test.  Is that the next step?  I can't get into the doctor because they are booked until a week from Monday.  So it's going to be a long week.  As far as going to a hepatologist, I can't seem to find any in this area.  The nearest larger town from us is about an hour and a half away, and can't find any hepatologists in those areas.  So guess I'll take the first step with the gastro doc and just make sure they administer the tests you suggested.

Thanks again,

Nancy

Nancy

[medicmommy]

Hello! (((((((((((((((((((((((((((HUGZ))))))))))))))))))))))))))
Something that really helped me from the start...Start your own personal medical file/ notebook...get copies of everything the doc does...Tests, etc...Drag this thing to all doc appts...And, as Jim says, highly recommend seeing a liver doc...Much more knowledgeable and up to date on current treatment options...Wait first to even see if you have a viral load (PCR)...If not, congratulations, you only have the antibodies and have "dodged a bullet"! May you be blessed with an undetectable viral load...Good luck...

[bennett_st]

I had a friend who used twice and got Hep C but cleared it and only has antibodies.  I'm not sure if it makes a difference the number of times you use to the status of the Hep C but fingers crossed maybe since you didn't keep exposing yourself to the risk over and over it gave your body the chance to clear the virus.

[NancyPF]

Thanks everybody for the positive words.  It really helps.

Can anyone tell me about the new treatment that's on the horizon?  I keep hearing about a new drug they are working on.

Nancy

[patti1957]

hello nancy - your story sounds identical to mine.  i have no symptoms and was diagnosed on a routine blood test.  i too experimented 30 years or so ago.  my first doc (gastro) sent me for a liver biopsy - it came back grade 3 stage 4 cirrhosis (NOT GOOD) - the doc told me nothing could be done.  i searched for a hepatologist but my ins would not cover so i found another gastro who specializes in liver disease.  he will be putting me on therapy to fight the hep c. (pegasys & copegasys) you need to find out what genome (spelling?)
you have and perhaps a liver biopsy.  i freaked out a few weeks back when i found out but frequent visits to this forum gives me hope.  keep a stiff upper lip and take action - find a doctor who will help you

[jmjm530]

The test that will definitively tell you if you have Hepatitis C is called a "viral load test".It also goes by names like a "PCR" test or a "Bdna". It's a simple blood test and it will tell you if you have the virus or not. Any Gastro should know what to order, although we've seen mistakes made here. If you happen to use Quest Labs, you might request their test which is called "Heptimax" which is a good one but there are many.

In fact, I see no reason why you just can't call your general practioner and ask him if you can have the test prior to the appointment. Will save some time and probably relieve your uncertainty. If the doctor doesn't have a Quest account -- all he has to do is give you an rx with "Heptimax" written on it, along with one of the diagnosis codes for Hepatitis C. Then, you just take the rx to one of the Quest Centers, they draw the blood, and send the results back to your doctor. In fact, depending on the state you live in, if the doctor gives you a note, then they will fax the results directly to you as well.

http://www.questdiagnostics.com/hcp/topics/heptimax/heptimax.html  (heptimax)
http://www.questdiagnostics.com/hcp/psc/jsp/hcp_psc_index.jsp (center locator)

[FloridaMouse]

I get treated by a gastro man.  My gastro is board certified and has special training in treating  heppers.   Like you, there are no hepatologist in m y area.  I am also followed by a hepatologist at Shands at the University of Florida.   Since travel to Shands is 3 hours for me, they laid out my treatment plan and are very comfortable with my gastro administering it.  They are very familiar with my gastro and said that I have  a good one.  

So maybe you can do like I did and get established with a GOOD local gastro and then travel to a major university for evaluation and a treatment plan to be administered by your local gastrol

Good luck to you.  Hep is not an automatic death sentence.

Mouse

[NancyPF]

Thanks everybody.

Does anyone know of a good hepatologist in Northern Calif.?  I could go to Sacramento if necessary.

Nancy

[Susie2007]

Hi There Nancy. You got some great advice and support here. Try not to worry too much. Treating hep C is not usually an emergency so you have some time to catch your breath and do some research and learn from those on these boards who have gone before you.

I use a gastroenterologist and adore him. He is very up-to-date and really knows his stuff. If you do want to use a hepatologist, there is a good one at UC San Francisco. Her name is Dr. Teresa Wright.

Wishing you good luck finding a doc you like.

[Kalio1]

It is hard at first, that initial shock of finding out you have  this is a real gut punch.  I remember it freaked me out something fierce. Hang in there. For me, learning as much as I could about it helped me. I like clinicaloptionsdotcom. It's worth the hassle of signing up.
I think it is worth the effort to travel to see a good Heptologist who is is working in the Hep C field if you have to. Then you could have him work with your local guy as someone else suggested up there. Your doctor is key.
There is a good group in SF and I believe they have offices in Sacto. One good doc there is Dr. Gish but there are others in that group that are great too.
Maybe call his office, you can google him. Some here have used him, maybe they will speak up.
First you need to acertain your condition and you will probably have a wait awhile to see the doc in order to do that.
Usually a biopsy is done (but not always) because that is the gold standard to determine liver damage.
How did the doctor know you had it? Was it that you had raised liver enzymes? Do you have any symptoms?  You are far better of knowing you have it, even though it is hard to find out, millions have it and don't know. It is the number ONE reason for liver transplants in America today, shockingly. Your story of not knowing for many years is not uncommon. finding out "by accident" is typical.
  It is known as a "silent killer" disease due to the fact that damage can occur unbeknownst to you. For many, not much damage occurs so try not to panic if you can, you are probably in the category of people that show little harm. For some, liver damage has developed. You will need to find out where you are in that regard. Did they tell you what genotype you are? What your viral load is?
Don't worry about the waiting part. It is nerve wracking but it seems to be the norm. The waiting is the hardest part mentally but it's a slow moving virus and there is no hurry.
Did the doctor tell you you shouldn't drink alcohol? That's important. Ask your doc for copies of your test results, as you learn about your illness you will become familiar with what they mean to your health.
The Archives here might answer some questions for you. Take care.

[Bill1954]

Hiya Kalio!

Nancy--

Hi Nancy,

I treat with Dr Gish in Sacramento, although I live near Placerville, CA. He is with California Pacific Medical Center (CPMC); this is a cutting edge liver clinic and transplant center, and although they are based in SF, they have remote clinics throughout Northern Ca and some in NV as well. I’ve been treating with them for the last few years, and think they are excellent. You can reach the SF office at: [phone], and they will direct you to one of their outreach clinics near you.

Try not to get too upset; although it’s a natural reaction, you’re really no more ill than you were last month, or last year, for that matter. Take this in little steps, it’ll all work out. I’ve probably been infected for over thirty years, and plan to be around for a while yet :o). You’ve received some excellent advice above… I don’t know what else to add at this point. Take care, educate yourself, and enjoy life!

Bill

[Bill1954]

Oops--

http://www.cpmc.org/advanced/liver/

Bill

[Rosebud41]

I'm pretty much in the same boat as you.
But, I have no idea where I may have contracted Hepatitis C.

I'm rather disappointed because my treatment was stopped after two inenctions by my gastro when my white blood cells dropped too low.  I will be talking to a hepatologist this week.  I was diagnosed about 1 1/2 months ago, and I really wish my first stop had been the hepatologist rather than the gastro.  I believe the gasto is doing his best, but I'm not sure if he had really focused on my baseline white count he would have even started the treatment.

My doctor had some success in the past and I think my case caught him off guard.

I was handling this matter a lot better when I thought I was doing something to correct the problem. So take you time and document everything, keep copies of all you tests and records. Then if you need to see another doctor you can do it without having delays to get records.

I feel you pain and you will be in my thoughts.

[NancyPF]

Thanks everybody SO MUCH.  It has helped so much to know I'm not alone and the references have been invaluable!!!

Nancy

[Bill1954]

You betcha :o)

[Mary4now]

Hi Nancy,
My story is similar to yours in that I found out after getting a needlestick, and yup there it was HCV  I'm not sure how long I've had it, but I think its from snorting coke in the 70's. or maybe the needlestick in the 70's or maybe my dentist, you see its very hard to tell when or where.  Some people received it from blood transfustions before 92 (I believe) anyway I was FREAKED, luckily I had insurance at the time, started the appointment process, by the way this virus is the ultimate WAITING GAME, between appointments, results, treatments, results.  I am now on anitdepressants cuz I was so anxious, and it can help if you are treating.  I had all my appointments, labs, ultrasound, biopsy and I have stage 1 w/ minimal inflammation, 800,000 Viral Load ( which apparantly is not that important) whats important is that you carry the virus and the extent of damage to the liver and oh yes the genotype.  Apparantly their are 11 of them now, the most common in the US is type 1, and it is the hardest to treat 50% clear rate, longer treatment time.  But in my case w/ minimal damage I have chosen to wait and see if better treatments come up and if my current life situation improves, as I was fired from work, am in between insurance, so I'm hoping to get that straightened out and prepare to treat in the near future.  Good luck w/ it all and DO NOT WORRY, it doesnt help, and its not necessary, educate yourself and realize that 80% of the people w/ this virus and undiagnosed, and 80% lead long lives, die of something else and its important to live a healthy, liver friendly life style.  The liver is an amazing organ, capable of regenerating itself.. so help your liver, love your liver and take as best care of yourself as you can.  Another lesson in impermenence.  Live in joy, even though you have the facts.   and keep coming back to post.  Mary XXXXXOOOOOO

[Jakied]

One thing in your favor.  Women typically have an easier time with hep C than men.  Estrogen is a natural defense so that is in your favor.

Also, with a siganl of 26.0 on the screening test, you definitely have been exposed to Hcv and your immune sysytem has produced antibody to the virus.  However, you may be one of the lucky ones whose immune system clears the virus without treatment.

the Pcr test will tell you that.  There is a chance that could happen.  Maybe 25% clear on their own.

I am sure you are a little frightened now but say a prayer, put your faith in the Lord and all will be well.

[burned74]

similar situation here. routine blood test.IV use more than 30 years ago.4 or 5 times, although I saw the figure that 70 per cent of people who used IV drugs even once have HCV. one time is too many for any number of reasons. .
I had been tested for hep C in 1991 and it was negative but my liver enzymes were elevated so i am assuming that the HCV test was the inaccurate type that they had at that time.
At least 20 per cent of people who are exposed clear the virus on their own, and i trust Jim's figure of a much higher rate for woman. I have a women friend who did clear on her own.
If you are lucky you may be one of those people. the viral load test will tell you that.
If you are not one of the luckiest ones, a liver biopsy will tell you what damage you have. mine was stage 2 after 30 years, which for me was a relief.

There is a treatment available and more on the way and many people successfully treat and clear. I was not one of them

I am going to use some figures that come from various websites but I think they are correct. 30 per cent of smokers have their lives shortened due to smoking but only 1 to 5 per cent of those with HCV die from it. In  addition most people do not have any ill effects from hep C until they reach at least early stage 4.

I wish I did not have it but there are a lot of worse things that could happen and after the first couple weeks, and the first couple weeks of an unsuccessful treatment I don't think I have lost a minute of sleep worrying.

bets of luck to you

[NancyPF]

Thanks everyone for the kind words.

Nancy

[treefarmer1]

Hello Nancy,I found out over 2 years ago that I have Hepatis C also.I injected drugs twice with a needle back in 1989 this was someelse who must have been infected with the virus.I am treating the virus with special vitamins for the liver,the herbs Liver 52 Milk Thistle, selinium,vitamins b,c,and e.and a healthy diet also drinking 6 to 8 glasses of filtered brita water.Look into this and other herbal treatments.Some are guaranteed to elimate the virus.Good luck Jack

[merryBe]

srry t hear your news but at least you will get lots of support here.

soon we will have our own faqs page (as soon as some willing soul takes on the project..but meanwhile go here http://www.janis7hepc.com/index.htm
the info is good although outdated somewhat.

hang in there and get to a liver doctor even if you have to drive a long ways.
(ps. there are no herbs known to cure this virus, although there are some substances that can help protect the liver and the progression of fibrosis.  We have our own very special doctor in here, Hepatitis Researcher, who has helped us to sort out the comfirmed from all the claims out there. I'll send you that link and you can read it when you are more ready.
My advice for now is take in your info in small bites so as not to be overwhelmed.
Also remember that 15 to 20% of people will clear the virus on their own, the others have a 50 to 90% chance of clearing with the help of current pharmaceuticals. So it is not all bad news.
maryB

[merryBe]

this thread will rove helful and lead to others that are as well.

My doctor said with prroer care my liver could go another 15 years before being shot, and I am stage 3/4 now, so with some preventatives there is great hope

http://www.medhelp.org/posts/show/346752