Please help :(

[ley1412]

I got diagnosed with hepc 3 days ago and i am devastated.  I dont know how and when i could of possibly caught it. Ive never used drugs or had any blood contact. I can only think of tattoos and piercings. I had my gallbladder removed on february this year, and i just wanted to know if they test patients for hepc before any surgical procedure? I hope they do and it was negative then because i have a 3 year old son and im praying that i was negative when i was pregnant. I read online that they dont test u for it whilst pregnant but couldnt find no info on wether they check before surgeries. I havent seen any doctor about this yet i just received a letter saying am hepc positive. I dont know who and where to go to ask these questions as my gp doctor was useless and said she dont know anything about it and printed some info about the virus off the internet which i already read it myself. Could someone please help me. Thanks so much

[patra_]

So happy to hear your news about your son!!!

Also, it is good that you so informed and have a plan for your own treatment.  The 12 weeks of treatment will fly by, and then YOU wil be hepc free, also!

With a low viral load, and all your organs okay, you can wait for the new tx you spoke of, with comfort!!

Keep on keeping on.  

Blessings

Pat

[AWorriedMom]

So happy for you that you are feeling comfortable with the diagnosis and that your son is negative. And, if I may pat all the posters on the back....they did a fabulous job for you. You can look forward to a long and healthy life.

[ley1412]

Hiya, i just wanted to give u guys a quick update.  First of all my sons results came back friday and thank god he is NEGATIVE !! :)) with me now, i am geno type 1 b. (Easiest to treat with the new treatment) Ive had all the tests done and my liver pancreas spleen everythin is perfect, no damage has been done. So the plan for me is that i will have to wait for the new treatment to be avaliable on the NHS for me to have it. It's avaliable now to those who have chirosis, mid april scarred liver and beggining of next year for people like myself. New treatment has 99% cure rate, its a 12 week course and very small side effects like head ache and tiredness. I am very happy with how things turned out. I was so scared. As u know my main worry was my son and thankfully he is negative. Just wanted to thank every one of u that commented here and gave me the support. All the best guys take care

Ley
Xxxxxx

[JubalMcClaws]

Just wanted to comment on incompassionate inform of HCV. I wasn't even aware I was being tested for it, let alone what it was. I was told over the phone, various std tests they had run were all neg." however you did test positive for hepatits c, Alright?" I said, alright, I guess, what is hepatitis c?
She, in hind sight, had not much more clue than I did! I was not offered any information and was told to contact my PCP. I opened up my slightly outdated 3" thick medical book and read two paragraphs and I passed out sitting in my chair! I immediately knew I was on my own, and was, until I finally found the hep c forums. You have the forums and great treatment regimens to keep you on the positive.   Best to you!    
JM

[ley1412]

Thanks i finally got my appointment booked for 22nd jan hopefully i will start the treatment soon as possible and u never know, one day i will post on here again to say am CURED :) thanks for all the support everyone, much appreciated x

[scratchinghead]

get your exercise and keep a good diet and don't drink any alcohol
I was floored when I first found out.

[flyinlynn]

HCV RNA quantitative IU - 127,461

That is the HVC RNA we have been asking about the 127,461 is your viral load so yes sorry to say it does look like you do have Hep c. But as there have said there are treatments available to eridicate hep c and you will be cured. I not see a genotype there that will determine what treatment is best for you.

CMV is the test for the cytomegalovirus here is some information on that

http://www.news-medical.net/health/What-is-Cytomegalovirus.aspx

EBV is the Ebstein Barr virus aka  mononucleosis aka mono aka the kissing virus

http://www.cdc.gov/epstein-barr/laboratory-testing.html

See your doctor they can help you out with all this

Best to you
Lynn

[ley1412]

Hi everyone. I received my blood results before i got the letter saying i am hepc positive. I just got hold of those results today and i will tell u exactly what it says and if someone understands please tell me as i dont really get it.

HCV antibody qualitative - positive
CMV IgG qualitative - positive
EBV NA IgG qualitative - positive
EBV VCA igG qualitative - positive

HCV RNA quantitative IU - 127,461
Molecular hepatitis clinical comment - consistent

These are the only positive things. I understand that it is 100% but would like a second opinion on the levels etc.  Thanks alot x

[Livelife777]

Hi Ley.   You can't honestly worry about where this virus was picked up as it really doesn't effect treatment.  It could have been anywhere.  I myself have zero idea, and regardless it won't change the outcome.
Please know that most likely your son is negative.  I had 2 children naturally and neither have this virus.  It is not your fault and please don't feel guilty as that can only cause you undue anxiety.
With the new meds, you will be able to treat and cure this virus.  It's not as bad as it sounds (treatment) and of short duration. We have all been there and will help you get thru it.  
So very sorry that you were informed in such a uncompassionate way.  
Just know that you will receive much support and guidance on this site.
.....Kim

[McGirl555]

I can only echo what everyone else here is saying. This is a great place with a lot of caring and knowing people. I know exactly how you feel. I had a son in school when I was told I had hepatitis C. I've posted this before, but I was told that I had 5 years, at most, to live. This was in 1997. I went into panic mode until I found a good doctor. Please find out exactly where your stand regarding HepC. I seriously doubt your son has it. My son didn't, but I think I got HepC from a transfusion after he was born, however, I'm not sure about that.

As far as testing you before surgery, I believe you would be required to sign a consent.

Get a good doc., find out all you can. There are some great drugs out there now.

All the best.

[Dee1956]

Hi, everyone has given you excellent advice.  I just wanted to say that if you have it the virus moves very slowly.
I was told I was positive before flying across the country.  It was so difficult to stop screaming and sit still in my seat
I thought it was a death sentence as I had seen a co-worker go through it for 15 years.
The best thing you can do for right now is try (easier said than done) not to panic.  I would not tell anyone until you know for sure what is going on.
I did not know of the stigma associated with it and I told everyone.  I was soon to find out that was a mistake.
You could try making a list of all of the things you need to do.  First it to make sure  you have it with the viral load, geno type.  Then you can go from find out what shape your liver is in.  You have time to think and plan.
The newer treatments are much easier and much shorter so that is a very good thing.  Especially with a 3 year old.
I remember being so afraid I had passed it to my two sons, they tested negative.
I have read in the past that many people are diagnosed when they go to their rheumatologist because of pains they are experiencing.  I do think the doctor should have told you before you got a letter in the mail.  That is so impersonal.  I'm sorry.
You have found a very good place to come where people will be more than happy to help you along the way.
Hang in there
Dee

[AWorriedMom]

HI There. I am not going to repeat what the other posters have said because every one of them did such an excellent job. But I can give you some statistics.  First of all, if you have had elevated enzymes in the past then you very likely had hep C then.But, these enzymes tend to fluctuate and 30% of patients never have elevated enzymes. They are just a marker and they really don't tell you much about your hep C. How high or low the viral load test (HCV/RNA by PCR) also is not prognostic. There are very sick people with low loads and people with little to no liver damage with high viral loads.

If you had it when your son was born he has a 4% chance of being positive. That is a 96% chance of being negative. My daughters were negative and I can count on one hand the number of children who I know who were positive. And because I work in the hepatitis C  community, I know tons of negative kids with positive moms. For the 4% who got the virus, children do very well and the liklihood of liver damage when they are young is close to nil.

Also the CDC does not recommend a change in sexual practices for married couples who are monogamous. It is almost unheard of for a woman to infect a man. It is more likely that a man can infect a women just because of the way we are built. This is a blood to blood transmission.

As one of the other posters said, the treatment for a person who has never treated before is 99-100% successful with maybe as little as 8 weeks of treatment or perhaps 12 weeks. Those of us who have done one of these new treatments have been pleasantly surprised. The side effects are quite minimal if anything. I had a bit more fatigue than usual and that is all.

The gastro will do a genotype test and it is likely you are genotype 1a or 1b. 70% of patients are. The new drugs have been specifically developed to work on geno 1's. So, if you have to have hep C you have acquired it at the best time ever....new and shorter treatments with magnificently high cure rates with little to no side effects. And by the way, routine hepatitis testing is not done before surgery.

Like the others have told you.....take a deep breath, be thankful this isn't 1990. You and your child will be perfectly fine.

[ley1412]

I dont know what they tested me for but was told 2 tests has been done and both are positive.. Not helpful at all. But early january i should get an appointment with the specialist to find out more. I will defo keep u updated. I just turned 24 two weeks ago, and my son turned 3 a week ago. I dont have anyone else apart from him, hes my world and even the thought kills me inside. But i hope hes clear. I will get him to the doctors on the 29th. I literally cannot wait to see the specialist for all this and find out exactly what is going on. Everyday seems like a whole year to me. I hope i dont wait too long.
Thanks alot x

[flyinlynn]

Not a clue on this and really not a lot you can do about it at this point anyway. So far I am still not sure you have hep c. I know you sai above nurse said two tests but neve you had the HCV DNA test specifically? If you have then the test will have your viral load and genotype.

So if you don't have hep c for sure your so  does not. If you do just get him tested. If you have hep c I doubt you will know when or how if you have no sure idea by now.

The only thing you can do is go forwards from here. How old is your son? Ask your doctor if he can be tested if you have the HCV DNA test as positive.

Best to you

[ley1412]

Thank u so much everybody. I would like to get ur advice on something else please. Ive had alot of health problems in the past 2 years and ive had over 200 blood tests done and everything has always been normal (im pretty sure theyve checked my liver too) but up untill 7-8 months ago my gp doctor said that "liver test came back a bit abnormal but nothing to worry about and come back in few months time to get re-checked" . Few months after, i was admitted to the hospital for completely something different. Whilst i was there, the doctor said to me that my liver levels have raised to 200 and the normal is 40/50. Again i was told there is nothing to worry about. I stayed there for 3 days and the levels were going down so before i got discharged they said its gone down to 100 and i should go to My own doctor after a Week for repeat bloods (which i forgot to go) but anyway, a month or two after that, i had my rheumatology appt and only those tests confirmed the virus. Does all this mean that i could have only caught the virus 7-8 months ago as thats the only time i was told that the liver test was a bit abnormal? Sorry am still trying to figure out the timing because am praying that i was virus free when i was pregnant. Thanks again for ur time everyone x

[susan400]

I know it's scary at first. But, it really is something that most people can live with for a long time. The good news is that for someone like you, who has never done any treatments, it is probably 99% curable.  There are few new medications that have come out in the past 18 mon. that would probably work well w/someone like you have is what they call a 'naive' patient.  What naive means in this sense is that you've never done any treatment before for Hep C.  I've had Hep C for approx. 31 yrs and I've had very little damage, but I have done MANY treatments for it and it has helped my liver to have a break. I've also made sure to exercise and to avoid alcohol.  I'm just trying to encourage you to not despair. There is hope.  Susan400

[Ekkiemom]

Hi Ley...Welcome to the community! So sorry u have the virus but u have come the right place for support and excellent advice! All of the above posts have given you a wealth of information and more in depth info as they are either post Tx or Tx'g currently and can honestly tell you you info that your Dr won't know as far as "the treatment" goes". We are all here for you as you go thru this journey. Don't worry please it isn't nearly as frightening as it may seem. I am currently treating and I would do it again if need be, but it's looking like odds are in my favor
Be strong friend
Peace
Deb

[ley1412]

Thanks alot lynn x

[flyinlynn]

Just want to add that hep c is not considered to be an STD. Folks here have been married for many years and one has hep c and the other does not.

I know you are worried about your son but the odds of him having hep c are very low and even lower for you ex to have it. Yes people are ignorant of what they don't know.

Hep c can be contracted by having tattoos done in poor practices shops which is likely where I got hep c 35 years ago. Yes iv drug users get hep c but I think about 25 % or so have no idea where they got it from. You don't have to tell anyone you know casually you have hep c. You should let medical people you see and you dentist know and if you are dating.

All of us here either nada letter in the nail or were told by our doctors and yes you feel blindsided and like you took a punch in the gut.

You need to know if they did the HVC RNA test it will have genotype and viral load results. Get copies of your tests you will need them.

If you do have Hep c for sure it doesn't really matter where you got it so don't beat yourself up you did nothing wrong.

Sending a hug to you
Good luck
Lynn

[ley1412]

Thank u so much for all this helpful info and support. I am glad i came here, everyone is very kind.. I would keep u guys updated on my situation. Please pray that my son hasn't got it. I dont care what happens to me hes my only concern but as u guys stated the chances are very low that i could have passed it on to him. My ex husband was being supportive but then hes one comment hurt me alot. He said "what if u spread this to me and our son?" The truth is, if he has it too, then we could never know who passed it to who right? He cudve had it before or i cudve. Me being diagnosed with it first doesnt mean i had it first. When i said that to him he said " i hope am negative before i get accused" i would never do that. Am worried about telling people because the first thing they'll think is either ive been a druggie or ive been sleeping around. Not many people know about this. I dont wana lose my friends because of this..

[48weeks]

The good thing is it is very treatable. The best thing you can possibly do is educate yourself on the various and the test results. Coming here is one of the best things you could have done. There are some very knowledgeable people in this forum and some of them have already contributed to your thread. Relax.

[pooh55811]

" i rang the doctors secretary And was informed that they done 2 tests which showed positive"
-------------------------------------------------

It would be advisable to call the doctor's office and ask them exactly which tests they did, in detail. Also, get a hard copy of all of the tests they did. Many doctors do not know that much about Hepatitis C or the testing and their secretaries know even less. So you need the hard copies to see for yourself what tests they did and what the results are.

If they just did the antibody test, then you need to have an HCV RNA done. The HCV RNA test will tell you if the actual virus is detected (as opposed to just the antibody). The test should say Detected or Undetected (although some just say less than a certain number, such as  <15  or  <2, depending on how low the test can detect the virus).

If you actually have detectable virus, then you need to make an appointment with  Hepatologist or a Gastroenterologist who specializes in treating patients with Hepatitis C. Be sure they are very knowledgeable in treating Hep C. You want someone who is familiar with all of the possible treatments for Hep C, the current recommended guidelines, the side effects from the drugs, etc. There are new treatments out now and they have much shorter treatment durations as well as many fewer side effects. In addition, cure rates are quite high.


Here is some information about the testing (from Lab Tests On Line):

An HCV antibody test is used to screen for infection. It detects the presence of antibodies to the virus, indicating exposure to HCV. This test cannot distinguish between someone with an active or a previous HCV infection. There is some evidence that if the test is "weakly positive," it may be a false positive. The Centers for Disease Control and Prevention (CDC) recommends that all positive antibody tests be followed by an HCV RNA test that detects viral RNA in the blood to determine whether or not the person has an active infection.

The HCV antibody test may be performed as part of an acute viral hepatitis panel to determine which of the most common hepatitis viruses is causing a person's symptoms.

The following tests may be used to diagnose a current infection and to guide and monitor treatment:

    HCV RNA test, Qualitative is used to distinguish between a current or past infection. It is reported as a "positive" or "detected" if any HCV viral RNA is found; otherwise, the report will be "negative" or not detected."
    HCV Viral Load (HCV RNA test, Quantitative) detects and measures the number of viral RNA particles in the blood. Viral load tests are often used before and during treatment to help determine response to therapy by comparing the amount of virus before and during treatment (usually at several time points in the first three months of treatment). Some newer viral load tests can detect very low amounts of viral RNA.
    Viral genotyping is used to determine the kind, or genotype, of the HCV virus present. There are 6 major types of HCV; the most common (genotype 1) is less likely to respond to treatment than genotypes 2 or 3 and usually requires longer therapy (48 weeks versus 24 weeks for genotype 2 or 3). Genotyping is often ordered before treatment is started to give an idea of the likelihood of success and how long treatment may be needed.

http://labtestsonline.org/understanding/analytes/hepatitis-c/tab/test/

[patra_]

Ley, hello and welcome to the Forum.  I think Lynn and Dee have already told you:  Take a deep breath, blow it out, and relax!  It is going to be okay!  Truly.

First, the chances that you infected your Son and ex-Husband are very, very, very (you get the idea) small!  So don't stress about that!  You have given you ex a heads-up to get tested.  As for your Son, ask the Doctor when is an optimum time to have him tested.  I do not think he has it, BUT it would certainly give you peace of mind to know------and, if he does, this is a very slow disease so he has years before he would need to be treated - and with the speed and efficacy of these now meds coming out, that would put him in the catbird seat as far as what and when to treat.

Now for you, Yes, you should be able to carry on normally, on these new meds!  Many of the people who are on the new Harvoni are reporting NO side effects, some are experiencing mild headaches, and some fatigue.  From what those who were on the AbbVie trials (just approved by FDA last week and will be on the market in Jan 2015) those are pretty much true for that med -  Viekira Pak.

Those with genotype 3 - who have failed prior treatments, will need to wait a little longer until Daklinza (daclatasvir) to finally receive its FDA approval (here - it has been approved and in use since August of this year) so it can be used with Sovaldi.  

I know this can be scary - living alone, with a small child.  One thing you might want to think about, is finding a 'Nursery School Buddy' Mom to trade off days/times to drive the children to nursery.  Then when you feel good, take extra turns, to build up credit.  I don't think it will be a problem, but, it would give you peace of mind, and might help someone else, too.

Don't mean to overwhelm you with info, but wanted you to see that there ARE answers, and the treatments (tx) are very doable - some with No to very few sides (side effects), AND that you are NOT alone!!  You have found a very caring, supportive community, who will be with you every step of the way!

You are stronger than you ever imagined - the more so as you have a small child - being mother to a youngster seems to multiply our strength and courage!  

Please take each step, one at a time, see the doctor, have a list of questions written down to ask ((so you don't forget them) and go from there.  One thing you want to do from the beginning, is get a copy of you Lab work, each time they draw blood, from your hepa's office.  Also, find out your Genotype and viral load.

Keep us in the loop and ask questions, for info, etc.  We are not doctors, but are a very experienced, knowledgeable community of heppers who have/are treating - some from four - 12 or so times, going all the way back to when the tx included interferon/or derivative,  injections.  Today, we, truly stand on the shoulders of giants, and they are here to offer advice and information, support and care, as are we all.

Again, BREATHE!  Now, keep on keping on - and go get that Dragon!  : -)

Pat

[ley1412]

Thanks alot for ur response. I went to the rheumatologist because ive been having alot of leg pain for the last 7-8 months and only last month they decided to check this thoroughly. Long story short after i received the letter i read that this requires few more tests to confirm i have the virus. So i rang the doctors secretary And was informed that they done 2 tests which showed positive. I had a bit of hope and that phone call shattered me once again. I now know for sure i have it. Ive been referred to see  the specialist. But what i find strange is that the doctor who tested me for this cudve at least told me that they are testing me for it. Can u imagine making breakfast at home for urself and ur son and u get a letter saying u are hepc positive! My whole life turned upside down! Not mainly for myself but i am so so scared and upset about my son! If ive given it to him, i would never forgive myself! I hate myself right now. I asked my ex husband to go get checked so now thats another worry added. Am happy to just have it alone but the thought of me spreading it to others kills me. Also i have another question. If i start the treatment would i be able to still do normal things i use to for my son? Eg taking him nursery every morning, cooking cleaning going parks etc. im a single mother and live alone with my 3 year old. Would the treatment be safe? Ex husband is in the army so he could only come on weekends. My parents live quiet far from where i am. Dont know how my future is going to be. Every direction i look at seems blurry, i cant see my future. As i said if it wernt for my baby i wudnt be as upset but thinking of ruining his life because of my virus/treatment makes me hate myself. What are the common side effects of the treatment? Ive read about it but hearing from somebody going through it would defo help. Thanks once again for ur time everyone