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allib


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I wanted to update those of you who have been so kind and supportive through all of this.  My husband's viral load was undetectable.  This is leading the doctor to say that he had a false positive.  The only follow up will be to check the liver enzymes to assure they are decreasing.  The doctor thinks he had hepatitis related to mono.  This isnt the first false positive on an antibody test for my husband.  In 2001 he had a false positive for HIV that was later confirmed as negative.  Not too sure what that is about. 



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allib


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Thank you all so much for your sweet and honest responses.  I am learning so much from this forum and I am grateful to have found it.  I tested negative, which is a big relief, because that means my kids are in the clear.  That was weighing over my head more than anything.  I felt such relief getting that news.  We went to see an infectious disease doctor today.  He ordered a viral load to confirm and nothing else.  He said that my husband testing positive for mono explained every symptom, and with no other risk factors, he feels that we should start simple, rather than ordering the slew of testes he normally would order.  We have another appointment in two weeks to go over the results.  I feel so much more at peace with whatever comes our way, especially since I know my kids are ok. 



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tomyboy


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Welcome to the forum.  Being diagnosed with hep c is hard to digest.  I remember years ago when my husband was diagnosed.  Believe me, back then the stigma was much harsher and we didn't tell a soul.   My husband was diagnosed over 20 years ago. He has tried treatment numerous times and has not successful beat this virus.  I too was concerned that I would be infected with it and am happy to report that I have been tested 3 times in the last 23 years we have been together and the results have always been negative for me.  I thank God as I see how difficult treatment.  You won't really know, until you receive the the results.  I wish you both of luck in your journey.  You have found a wonderful forum full of people with a wealth of knowledge, support and information. 



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Enavigo3891


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Hi Allib,

I too am new to this forum but not to HepC. I agree with pretty much all the responses you received as well as your doctor's suggestion of getting your kids tested if you test positive.  The people I've come across here thus far are great. They will give you all sorts of advice and share their journeys. As for the decisions you make though, such as to tell people or not to tell people, to get your kids tested or not, for your husband to treat or not.... unfortunately you cannot get those answers from here as everyone's journey is their own. But don't confuse that with being alone, because your not. It's just that everyone's experiences will be different.

As for me, I was born with it as was my sister. We were diagnosed at 13 and 16 respectively, therefore the doctors assume we were born with it. I just turned 30 on Sunday and if you looked at me, you'd never know there was anything wrong with me (as is the case with most people). About a month ago I had my regular "getting older blood work" done along with "the whole 9 yards liver function tests" done (all the blood work, AST's, ALTS, etc) and thankfully they are all dead center perfect (for now... hopefully for a long time). Aside from that one little line that says "HepC" I'm healthy as a horse and I've been carting this little devil around for my entire life! I have never done treatment nor does my doctor want me to start on any yet. That decision is based on the blood work, my genotype, the available treatment options, and what I want to do. I don't know where you're located but I would say the key is to finding a doctor that you're comfortable with and one who actually listens to you. A doctor that shoves medicine down your throat without knowing EVERYTHING they can know (including your wishes) is no doctor I'd want to see.

In regards to figuring out how he got it, like Jill also said, some know, some never will. Don't let that question bog you down know because in a way, it doesn't matter. It is what it is now and you've only got the future to think about! For your kids and family's safety; when my sister and I came up positive, the doctor wanted to test my step mother (who raised us) as she'd been the one cleaning up our bloody noses and bandaging our skinned knees, etc. She was negative. I lived with her from age 3 to 16, she had plenty of opportunity to catch it and did not!!  My sister has given birth to two children and neither of them have it (the odds are VERY low to pass from mother to child ... even lower in our case to pass to 2 children, but I digress).  And as for telling others, that to is a big one and only you can make that decision. Just remember, you can never UN-tell it once it's told.  Only a very few people in my life know about it and it's because as someone below said, it's the "Stigma" and my knowledge of how ignorant everyone else can be. I know that the only way for that stigma to change is for people to be educated. I personally had some bad experiences; had a dental hygenist refuse to clean my teeth, was denied my dream career for which I went to college and got myself in student loan debt for, and was then denied acceptance into the service. I just had this discussion with my doctor last month and he said that was wrong of all of them. I knew it was in my heart, but at 22 years old I wasn't really ready to take on the world. I'm not sure I am ready to take it on at 30 either. The point is, only you can decide who and what and when you want to tell.

Anyway, I wish you and your husband the best... welcome to our journey (LOL) ... And while you may not always have something to say on here, I have found sometimes you get more information than you could have wished for by just reading about others journeys. Stay positive!



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
Cinnamon Girl


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Hi again Allib, 12Step is right,  you wouldn`t get your test result for Hep C back that quickly.   I know it must all be a worry for you but please don`t jump to conclusions.  It`s frustrating having to wait for test results, and all of us here are familiar with that!

I think a forum like this helps a lot of people keep going and feeling positive, it`s why we stay around.  It certainly helped me a huge amount when I was on tx as I was living on my own without a lot of support.  Feeling part of a community with a common goal can be very reassuring, and sharing our ups and downs is all part of it.

Hang on in there, Jill

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
12Step Guy


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A Hep C antibody test doesn't take long, but the true test (HCV RNA) usually takes at least a week. So if you had a blood draw yesterday, I don't think a RNA test could be back yet.

 I think it is OK to tell folks that this issue is being investigated by your Doc. (Unless your Norwegian, then never share anything even if it means getting isolated, alone and worse LOL). The thing is with C; is that the first thing we feel is the stigma. It takes some guts to talk about it. But there are so many ways it can be contracted that we need to bring it out of the dark and into the light. Even if it turns out you don't have it, you can help guide the way for others in your situation.



__________________

Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
allib


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After talking to my doctor's office last week, they suggested I be tested as soon as possible.  I had not done my "wellness" blood work yet (cholesterol, etc), so they said to come in and they would add a hepatitis panel to the order.  I went in yesterday morning.  They called me a little while ago and said that the doctor wants to see me.  So I have an appointment at 7:30 tomorrow morning.  I am guessing here, but I would assume she is going to tell me I tested positive to hepatitis C.  She may just want to go over my lab work with me and tell me my lipids are elevated or something.  It makes more sense if I have hep C and gave it to my husband.  He has no risk factors what so ever, I am a nurse, so I could have been exposed somewhere along the way.  I worry for my children.  Their pediatrician said that he does not recommend testing them unless I would test positive.  This has been a pretty stressful experience.  I keep reminding myself that there are worse things to be diagnosed with.  Everything that I am reading suggests that there are such great treatments coming out soon.  My husband and I are both in our early 30s and in excellent health (runners/triatheletes), no smoking, and occasional drinking, so hopefully that all works in our favor as well for treatment and recovery.

How do you all stay positive and optimistic?  Is it easy to share your feelings with others in your life, or is most of your support found online in forums like this?  We havent told many people what we are going through, especially since nothing is confirmed.

 



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Matt Chris


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Welcome Allib

The forum can really help you with your journey, with many members having great insights into the ups and downs of the treatment.

So don't be afraid to ask...

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Cinnamon Girl


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That makes sense, any good GI or doctor specialising in liver diseases should be able to give you the information you need.  Hearing the news like that while still on vacation must have made it so much more confusing for you both and it`s good to hear you`re getting things moving forward so quickly.   Once you start getting to grips with the facts it all seems easier to deal with.

Let us know how you get on...and in the meantime try not to worry!  smile  ~ Jill

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
allib


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Thank you so much, all of you.  This has been a whirlwind of a week.  We recieved the news over the phone on the last night of our vacation.  The nurse did not know a whole lot about the disease, so as soon as we got back to the hotel the hunt for knowledge was on.  As of now, the doctor wants us to see an infectious disease doctor.  The appointment is in three weeks.  I asked if we could get a viral load test and they said we couldnt because interpreting those results would be out of the doctor's scope of practice, so the doctor we are being referred to will have to order that.  I am going to call tomorrow to see if they can get us in to see a gastro-intestinal doctor.  In our town we do not have hepatologists--but there are some a few hours away.  Again, thanks so much.  I am so happy to have found this group.



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JIme


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Hello and welcome to the forum.

I lived with it for 35 years with my family growing up around me and we had no problems. When my oldest was born we asked to have him tested for Hep C and HIV. The hospital said they never had a request for that, ever. ( 1988 )  They said he was too young? and they tested my wife. She was negative.  I was negative for HIV but positive for Hep C. At that time I was grateful I had the Hep C and not HIV.

I lived a great life mostly symtom free for a long time, 35 years to be exact, before I started to feel some effects from it.  Everyone is different but many people do live a long life with the virus. It is a slow moving disease for most people. It just depends upon how it affects your husband. Everyone is diiferent. Most of us on here have had it for a long time.  Good luck and as others have said, getting some additional tests might be a good idea.

Have a great day!

 

 



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
12Step Guy


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We cant give medical advice, nor do we have all the answers. Get that from your medical team. My answer is what I have found to be true. First of all don't panic (like you really can control this LOL). Your doctor needs to do a definitive HepC test for live virus, then a biopsy to test for liver damage. I've never heard of a family member getting HepC by sharing stuff (unless youre sharing IV's or needles). It is theoretically possible, but just doesn't happen. Same for intercourse. Your kids are safe. Ive never heard of this actually being passed on to kids.

 Most initial screening tests give a false positive, it might mean he was exposed to some form of Hep, but cleared it. The first round of testing is usually just testing for antibodies. There is quite a bit of information in the Stickies. Keep posting, keep asking questions. Its going to be OK.

 Others will respond, we all are there for you.

Vern



__________________

Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
allib


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This seems like a wonderful place and I am so happy to have found it.  A little back ground:

A few weeks ago my husband hadnt been feeling well for about a week (headache and fever), went to the doctor and she diagnosed ear infection.  Gave antibiotics and at follow up the ear infection went away, but he was still running low grade fevers from time to time.  He went back to the doctor last week and had lots of tests run.  The first came back with a high AST, everything else normal.  So she ordered additional labs to be run on the blood they had taken.  Got a call yesterday evening and the nurse said he was positive for Mono, Hepatitis C, and something else (we were in such shock neither of us can remember).  He has no risk factors and we can not figure out how he came in contact with this.

A few questions:  What next? What questions should I be asking?  Should my children and I be tested?  (I just had a life insurance physical about 5 weeks ago, do they test for that?)  We had been sharing a razor and now I see that is a big no-no.  Also, is there anything he should steer clear of (for example, we know he should not drink alcohol)?

We are so overwhelmed and scared.  My husband is 33 and we have three kids 3 and under.  We are out of town right now, and I just want to get home to hug my kids. 



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Cinnamon Girl


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HI Allib, and welcome to the forum, I`m glad you found us.   All of us here know what a shock it is to get the diagnosis of Hep C and can understand how scared you must be feeling right now, but remember that this is a very treatable disease nowadays and you and your husband will get through this.  Getting the news via a phone call really isn`t the best way to find out either.

Vern is right, your husband`s doctor will most probably want to do a batch of tests to confirm the diagnosis and get more information on the health of his liver.

Some of us know exactly how and when we caught the virus but many people have no idea.   The main thing now is to move forward step by step and gather your information together.   Assuming the diagnosis is confirmed, you`ll want to find out your husband`s `genotype`, which is the particular strain of the virus he`s infected with.  That is what decides which treatment regime would be the most suitable and is one of the routine tests that his doctor will want to do.

As for having your children tested, I don`t think there`s any hurry for that at all, especially as they are so young.  As Vern said, the chances of passing it on to other members of the same household are very low, as it can only be caught by blood to blood contact.   As long as you take sensible precautions about sharing anything that could have a trace of blood on it, like razors, toothbrushes etc, you should be fine.

Yes you`re right, your husband should totally avoid alcohol and try to keep to a healthy lifestyle and a good diet.  He is young and if he decides to have treatment should respond well.

Stay around and you`ll get all the support and information you need.

Keep in touch, you are in good company here!  smile  ~ Jill



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
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