New member and newly diagnosed.

I found out today I have hep c. I'm 6 months pregnant and my OB wanted me tested because I work in the healthcare field and have for the last 3 years. I am so scared and have not been able to stop crying since my appt this morning. I had a liver functioning blood draw done today and now am waiting for my OB to send a referral to a G.I. Dr. I have been reading on numerous websites this afternoon but it all seems so foreign to me. Am I going to die? Am I not gonna be able to see my kids grow up? Did I give this virus to my husband?(he's going to get checked) I have so many questions and feel so lost. I figured a place like this would be a good place to go to for advice and comfort. Any advice, knowledge anything is appreciated.

clb08, Sorry you had to find us this way. We have a number of people here with different varieties of liver disease. I have liver disease from alcohol abuse myself. While I don't know much beyond my own disease I can assure you that treatments are available. It's not only possible but highly likely you'll live a long and relatively trouble free life. Some of our members have had the disease for 30+ years and didn't find out till later on in life. I can't think of one wife transmitting the disease to a husband since I've been here.

You need to get in to see a Hepatologist for definitive answers. I'm sure your current doctor is knowledgeable but when it comes to liver disease it's best to see someone who specializes in it. Once you know exactly what it is your up against you'll be a lot better off. Main thing is not to get yourself worked up, Worrying isn't gonna solve anything and it aint good for the baby either. I'm sure our more experienced people will be on here soon to help you along.



Ziff

Oh, no. I just posted a really long post to CLB and it zoomed away. GASP.

Welcome to the forum.

No you aren't going to die today. Liver disease is a really long process. And if one has to have Hep C, this is the year to be diagnosed because the new medicines are effective and soon to be available. They are working a large % of the time and many are reporting that they are CURED.

It is likely your experimentation is the culprit. I wish young people knew about liver disease...and could make that choice to experiment with all the facts. There are lots of other ways to be infected...transfusions before the blood was tested, medical contamination especially in war zones, transmission at the dentist with unclean equipment (seen this in the press lately), inhaled drugs (sharing straws), tattoos before the parlors were regulated,

My partner has had Hep C since 1969 and even so he carried on partying (booze only) until 2010 when he almost died! But they patched him back together, had him join AA, and got him evaluated for transplant. He is over 2 years post surgery and over 3 years sober.

He has never infected me in the 33 years we have been together. We use separate toothbrushes and razers. And are pretty careful as you are in your medical field. I use gloves at home to administer first aid, for example. And we don't share towels or bars of soap.

Some say you need to use condoms but we have not and I am not infected.

The basic rules are eat a healthy diet, rest when you need to rest, cut down on salt and red meat, and keep hydrated...general good health stuff.

There are some GI docs who are hepatologists, but several of us have experienced better care at a major medical center with docs who specialize in hepatology ONLY. Almost everyone here with Hep C sees someone at a center. My partner goes to Jackson in Miami which is part of the UMiami Health System...a huge medical school that does liver transplants (adults and children) and multi organ transplants.

I think your greatest concern would be the vertical transmission of the virus to your fetus. It can happen in vitro or during birth. I don't know how frequently that is the case. I would think you would want to read up about that. And for that reason ALONE I think you need special care!

Best to your family, share your issues here, we will help when we can,

And this:
http://www.hepatitiscentral.com/hcv/hepatitis/breastfeeding.html

In my haste to post something useful to calm and support you today....I failed to mention the first link was info from the late 1990's. Much has changed, but some things are the same. The above link is regarding breast feeding and Hep C. I will try to locate anything more up to date for you. Hang in there.

Take care. themiz

Thank you all for taking the time to respond with helpful information. At what point does someone start getting treatment? I know that I won't be able to do any type of treatment while pregnant. Are my chances any better since this was caught early on? Or is it the same say if I found out 20 years from now?

If you're not expecting the diagnosis, it can be such a horrible shock. Went to the dr. because I was so tired all the time ... I thought it was likely something emotional, not physical. It was like a sledge hammer to the gut when she told me ... and it was a very confusing time. It was 15 years after I'd quit drugs and turned my life around. I remember lots of shame ... and feeling so exposed, like my past had caught up with me.

Expecting a baby should be a time of joy, not of this kind of discovery. I'm so sorry you have to learn about this now, too. Dig deep ... your best defence will be information. It sounds like, from themiz's link that it depends on how advanced the liver disease is in you as to how they will treat the Hep C ... and that treatment options will likely change after having the baby.

If you didn't have symptoms before the diagnosis then there's every reason to hope for the best. Like Ziffle said "Some of our members have had the disease for 30+ years and didn't find out till later on in life. I can't think of one wife transmitting the disease to a husband since I've been here." So true ... if you don't remember anything else that's been said ... remember that! It took quite a number of years for me to exhibit symptoms. Also I never passed it to my husband and we didn't use condoms.

If you're in the medical profession and are positive for Hep C, do you know how it might affect your career? It took me some time be able to discuss it with my employer - but he needed to know because I had to take time off during treatment.

It took me years to learn that the way people react depends on the way you present it. If I hold my head up high, look them in the eye and say I got it "from a mis-spent youth" it usually stops their questioning. Just choose who you tell ... there are many people in my life who don't know I have it. They don't need to know. Some folks are nosy wayyyy past what is polite.

I only told those that absolutely had to know ... to give myself time to comes to terms with it. Information was my is the best defence. That was one of the hardest things I've ever had to do ... to hold my head high and not let shame take hold of me.

Let us know your progress ... and share what you learn. It can make it easier for those who follow you.

You found the right site ... folks here truly care!

Do they make treatment affordable to people? Or do most insurances cover this type of treatment. I have state insurance, I'm wondering if that will make any type of difference.

Please remember this: It doesn't matter how you got Hep C. The important thing is to do whatever it takes to live with it and hopefully get treatment for it. It's no different than the flu. None of us went looking for it, but it found us.

The PCR was already done and was confirmed active is what my OB said.

It is unsafe to undergo treatment for Hep C while you are pregnant.

One in twenty women pass the virus to their baby.

The odds increase significantly if you have a viral load over 1 million or if you are also HIV positive.

New drugs and treatment options have significantly increased the rate of SVR ( "Cure") in Hepatitis patients, though the numbers differ depending on your genotype.

It is normal to be worried, but you should remember that it is far from a death sentence and the odds of you living a full and healthy life are pretty darn good.

You need to be under the care of a hepatologist who can taylor your treatment to your needs.

Liver functioning test came back NORMAL. Can anyone tell me what that means? Obviously I know it's GOOD! And my liver isn't damaged. Is that basically it?

Yes, ML is correct. I did get a initial diagnosis of Hep.C. Testing is the key, along with finding great doctors to do the testing. I was diagnosed at a small local hospital with little to no real world experience of dealing with liver disease. I believe it was a rush to judgement. Only thing that saved me was a twist of fate by being relocated to another hospital while still unconscious (semi coma). Long story short I have a severely damaged liver (Alcoholic Cirrhosis) and without proper testing/treatment I would have long been dead. So many folks probably have written themselves off as dead and given up due to my exact situation.

Ziff

I had and I will say again had hep c. I was cured of this disease while on a trail study for a new medicine. They are going to cured people of this disease real soon. Of course depending on the stages you could still get cancer of the liver. But I have stage 2 and they say that it could go to stage 1.
The new medicine didn't get me sick like the other one did and the other didn't work for me. Please be patient and I know that all of you will have this drug some day soon.