Hepatitis C- Just found out - very scared and confused

I went to the doctor last week because I have not been feeling well they ran some blood test and My liver levels were really high, she said they ran another test and it came back weak. (sorry the conversation is all a blur) She said they were going to run some more test and will get back with me tomorrow 11/8/06.But she said it is Hepatitis C. I am only 21 years old.Everything I have read says you get it through blood, needles, or sex.I have never done drugs or had any blood.I have been with my husband for 5 years married for 2 so it is not like i have had a lot of sexual partners.I guess I just want to know where I got it from. I do remember the nurse saying something about since the second test came back weak my body might be fighting it off,is that right? Also, 3 weeks ago I felt so bad and now I feel so much better it just doesn't make any sense. I guess right now i am scared, I know nothing about hepatitis C and I scared if i have had this for a long time and just didnt know it that I could have gave it to my son when he was born 3 years ago.It is normal to have this and not know where you got it.My husband and son will be tested next week.  Any advice or just any information anybody can give me will help.I have been in tears since yesterday because i am confused& scared.I am not sure how people are going to look at me.My whole life I have tried to do the right thing and not do drug or sleep around and I get this and the first thing hte people that do know is how did you get that? My husband has been very caring and supportive.Please just any advice would help.

[tulsatime]

welcome, I am so sorry you are going trough this. There are other ways to catch it. your mother, A tatoo, nail salon, body peircing, snorting drugs. Sometimes people never know where they catch it. The main thing is that you know and can keep an eye on it. I would have your child tested but I think there is only a 3% chance through child birth. So don't worry your self sick and in fact you are very young. You will be just fine. This is a slow moving desease and you have time to get all the  test done and make an informed decision about whether to treat now or wait for the new drugs coming out soon. The tests next is a genotype test and a viral load. Also there are 15% of the people that fight the virus on there own. The only way to find out is a PCR test that is a viral load test. Don't worry until more test are ran. come back here for suport and read alot of info a good site is,
http://janis7hepc.com/index.htm

Hope this helps... Debi

[tulsatime]

Yes I seen we crossed and I thought we said much of the same. But yours seemed more compationate. You have a way of making people feel good and it comes out in your replies. Take care, Debi

[GrandOak]

Welcome to the forum, I only wish it could be under better circumstances.

Please do not spend too much time worrying about how you got infected as 60% of the people who are diagnosed never know how it happened.  I think many others, myself included, may have an idea how as we may have engauged in activities which are considered at risk for contracting this disease but even those of us in this catagory can only guess and never know for sure.

The main thing to focus upon now is deciding whether to fight the virus, and given your age what implications the treatment medications may have upon any future plans for more children.

It is good that you are having the others in your family tested to either get them help if necessary or at a minimum, to put your own mind at ease.

I would recommend finding a good hepatologist who is very familar with HCV and it's treatment options, as we see far too many doctors who either do not know an wing it or know a little and try to treat.  Sadly either of the latter choices to often result in botched treatments, I know from personal experience, or complications during treatment which might have been easily avoided it handled properly.

Although we are only patients here, no doctors, many of us have done a lot of research and/or learned the hard way from direct experience to help offer advice and support as you deal with your situation.  I know from my own experience that my doctor, although quite familar with the disease and even has written books on it, admitted at times that it seemed I was more abreast of breaking information because I invested more time focused upon this disease whereas he is trying to keep abreast of many advancements being made in the entire Hepatology, Gastroenterology, Transplantation, and other related fields.

Hopefully you will find the information and support you need here to move forward regardless of what decision you make upon whether to combat the disease or not.

[Kalio1]

I am so sorry about your diagnosis. Many people find out by "accident" that they have it and are shocked. There is so much misinformation about Hep C even within the medical community. IV drug use is the most common way to contract this, but it is by far not the ONLY way. You can contract it at birth, or if you had any blood transfusions or blood products before 1992 when they started screening the blood for it. You can pick it up in other places as were mentioned before, nail salons, getting a tattoo even having your ears pierced or at the dentist or during a surgery or outpatient procedure. It is highly unlikely to contract Hep C through sex but it is not impossible. Most people think it only can be caught through sex or drugs neither of which are true.

Please try to learn all you can about it and get copies of all the test results from your doctor. Your doctor will help you go through the steps of finding out the condition of your liver and if you have any damage now. Then once you have ALL the information you need about your situation you can decide if you will do treatment with Interferon and Ribivirin or if you will wait on treatment.

Try not to worry too much about your husband and child having this, the chances do exist but they are small.

I am so glad your husband has been supportive, that will make a huge difference. I hope he understands that this does not mean you did anything wrong to cause this, it is just one of those things. You will probably never know for sure where you got it, many people are in the same situation. It really doesn't matter, it is a virus, you caught it somehow. Since it is a realitively newly identified disease there are a lot of unknown factors about it. One thing we do know is that being Hep C positive puts you at much higher risk for contracting other diseases, like Diabetes and Lymphoma along with other disorders and illnesses. You can use a search engine and check "extrahepatic manifestations" and get lots of information about that.

The treatment does not work for everyone, but it does work for many and you can clear the virus with the treatment. There are also new treatments being developed that look promising but they are still in trials and have not been approved by the FDA.

Try not to worry too much, just go step by step and learn as much as you can about it. It is a very slow moving virus so there is no hurry to make all the decisions. I hope you feel better soon, but feeling better does not mean it isn't still there and causing your body harm. It is known as a "silent killer" because most people do NOT have any symptoms at all until so it goes unnoticed. They do not test for it unless you are a previous or current drug user, which is too bad because people like me and yourself are not tested until they are sick.

It sounds like you have a good doctor and that will be very important in your care. Did your doctor tell you which genotype you have? That will also be important to you and our decision making.

Take care, I want to welcome you to this forum. There is a lot of good information and support here. All of us here have Hep C or are caring for someone who has it or are treating for it so we know what you are faced with. Please do not let the misinformation and stigma get to you. People are just ignorant about Hep C and think it is a "druggie" disease but the truth is 20-30% of the people with this virus do not have any known reason to have it.

It is the same type of prejudice we saw when AIDS was discovered and many people had it who were not gay and did not get it from sex at all but from the hospital but they still had to fight the stigma and misinformation.

[willows]

Welcome!  I sat on the sidewalk outside the lab when I found out I was positive and cried.  Didn't even care who was watching.  It is a shock, allow yourself time to adjust.  Fight back, don't fall into victim mode.

For me, fighting came in a couple of ways.  Educating myself by use of the computer, wow, there is sooo much out there about Hep C, eating well, getting rest, herbals that help, new drugs that ROCK and after four years, I am still learning.  

Keep copies of all your medical records.  It is an empowering feeling to make the decision to become the one who is in control of yourself and your body.    

Resolve to learn to be a bad a ss with doctors, as in asking any and all questions you might have.  I kept a notebook and wrote down questions as the weeks went along and took it to the doctor with me.  Actually, my doctor appreciated it!

Learning to be a fighter might sound hard or even impossible if you are not used to the concept.  If you search yourself, you will find the parts of your life that you believe in strong enough to fight for them.  To say that Hep C is slow moving is not a lot of consolation right now, but as you learn about the virus, time will become your best ally.

Lastly, (wow, so philosophical before my second cup of tea), know that there are so many fine people on this board and a few others that DO know how you feel.  Carrying the virus and sharing experiences seems to bring a kinship that I value very much, I feel less alone every time I read this board.  And it may not seem like it now, but this board and others can become an important tool for you.  We ask each other the craziest questions....and never get laughed at.  Well, unless it is funny.  Then we all laugh together.  Take care.
Willow

[Alady1620]

I am sorry for your diagnosis.  As time goes on, you will learn to accept your condition and it won't be so hard.  It is normal to be very upset for a while after a hep c diagnosis so go easy on yourself.

The chances that your dh or child have hcv are very small.  I know it is impossible not to worry but getting them tested asap will take a load off of your mind.

There is good news for you.  You are relatively young and you are female.  That means your treatment is more likely to be successful.

Hang in there.  We are here for you when you need to talk.

[sindog]

I don't know how I became infected with Hep c either. I found out that my dentist of 25 years also has it. Maybe he gave it to me, maybe I gave it to him, who knows. The important thing is to take the advice the others above have given.

When people ask how I got it, I reply, "If I knew how I got it, I would have changed that day and not became infected." But you cannot change that day.

I know you are scared because I was too. Also, you are very young to be faced with this. Take a deep breath. You are not going to die. You will wake up tomorrow, and the next day, and the next. I did, and you will too.

[nitramog]

i was about 14 wen i got it and 45 intil it was much of a problem thay have came along way, from non a non b hep, to years latter a smart man called it hep c,  treatmont didint realy exist then!way before your my age treat mont that works well, and easy, on peaples body will be ther? being able to treat before advansed staeges sets in and body systems are still strong is a big plus

[Kristina0726]

I want to thank everybody so much for all your advice and help.  You have no idea what it mean to hear from people that have been in the shoes I am in right now.  I know this isn't something that is going to kill me but it is still an emotional shock.  I have really listened to what everybody has said and I know that I need to just realize this is what happened and I can't change it and move on but right now my emotions wont let me.  Hopefully soon I wont tear up everytime I talk about it. I don't know what I would do if I have it for a while and gave it to my son.  

What is genotype and viral load?
What is the difference between Acute and Chronic?  How do you tell which one you are?  

Somebody said I should contact a hepatologist?  Right now I am just going through my family doctor should I change to a hepatologist.

I have been looking up Hepatitis C online but sometime you get answers you can understand better through people.  I heard the Drugs used to treat Hep C have really bad side effects has anybody ever tried any Herbals meds or anything like that?

I am scared to because I went to the ER 10/23/06 because I didnt feel good and my husband made me I have had ovarian Cyst and Kidney stones in the past and thought that is what it was they did a bunch of test and then sent me home and my husband made me go to the Doctor 10/31/06 even through i felt better and they said from a week before until the my Liver levels have gone up alot.  Does that sound right for them to go up that much ina week?  To me that doesnt sound very good.  Also, I feel so much better now is it normal for the symptoms to come and go.

I just want to let everybody know that this is a great place.  I have learned so much just in the couple people that wrote and just to have that understanding and caring from people that have been in the same place.  I can talk to my husband and mom and friends but they just dont understand and how I feeling.  Just thank you guys so much for caring.

[copyman]

hi GO, maybe i missed your post but how did your doc appointment go? what did they say is the plan? hope you got some good news. my prayers go out to you.

[Kristina0726]

Thank you for your advice.  What herbs did you take?  I have read such bad stuff about the treatment for Hep C that I would rather try herbs first.  You are right, I am not going to take anything new until the Doctors have done all of there test.  I hate waiting for the results now I dont want to make anything worse.

If you or anybody knows of any herbs that I should start reading stuff on that will help let me know.  I am not too excited about new age medicines so if I can correct the problem with natural stuff I would rather do it that way.

[Kalio1]

You can't correct the problem with herbs or supplements, only the treatment can do that. However, some people do find that these things help them to feel better even though it can not remove the virus.

A good book with tons of information on both Eastern and Western treatments is:

The Hepatitis C Help Book: A Groundbreaking Treatment Program Combining Western and Eastern Medicine for Maximum Wellness and Healing

by Misha Ruth Cohen, Robert Gish, Kalia Doner

It's a great book, you might want to pick it up while you go through all the torture of waiting on appointments and tests. The waiting IS the hardest part.
Also try not to fear the treatment too much, I know you hear horrible things about it but the treatment IS "doable"
not always easy, but doable.

[Sally01]

Sorry to hear you have not found healing with treatment.  As overwhelming as it seems, transplant is NOT such an unreachable plan.  I found that what the teams are really looking for is a real willingness to care for a transplanted liver post surgery.  The surgery itself to them at least is simple.  Its the aftercare that requires a real commitmant and is what they want to know.  Keep all appointments and let them know your intentions to followthrough.  Don't know too much how the waiting list "really" work but keep them aware of you and know that they will probably not consider you until you are very ill but then they will Know you.  If you have an unusal bloodtype or body size, it could work in your favor.  I was pain old a+, average build but when I got end stage they pulled through.  Also don't forget that there are newer live donar transplants going on with success.  Its not so bad once you get your mind right.  I will be thinking of you.

[Alady1620]

I always recommend Janis and friends to newbies.

http://www.janis7hepc.com

They have really good explanations that will answer your questions about chronic and acute, genotype, and meds.

An acute affection occurs when someone first comes into contact with the hep c virus.  Some acute infections clear on their own with no medication.  If the virus doesn't clear on it's on, it is said to be chronic.  

There are different kinds of hep c.  Genotype tells which kind a person has.  I am 1b.

Yes, the meds make some people very sick.  Not everybody has bad side effects tho.  Some people take herbs but there are no medical studies that prove the herbs work.  Some can actually do more harm than good.

You need to see a hepatologist or a gastro doctor for your treatments.  They will test you for genotype and recommend a course of therapy.  Like I already posted, you may not see it right now but you are very lucky that you found out about this early.  Because you are young and female, you have better chances that your treatment will work.  Hopefully, you will treat and become SVR.  That means that the virus is not active in your system and not detectable.  

Keep educating yourself and, please, do not drink alcohol.

[GrandOak]

Tx is a Bust.  VL jumped from 2,950,000 IU/ml at wk 24 in July to 4,457,570 IU/Ml at wk 39 on 10/20/06.

So, I'm now catagorized as one of the nonresponder class and on day 4 day without meds.  Can't say I miss the Riba though.

Downside is that they even withdrew the possibility of the Infergen (CIFN) / Riba tx option which was mentioned last September and maintenance tx is also unavailable.

Basically I've been placed on a monitor and wait for a better tx or transplant, whichever comes first therapy.  They also failed to send results of Friday's CBC or respond to subsequent email.  It kind of makes me wonder if it really isn't more of a sign the the HMO gravy train schedule listed my situation as a "no further payment available" and left me as yet just another number in the statistics.

[NYgirl]

I'm not exactly sure (cause I'm an idiot who probably forgets) but why did they nix you on the Infergen?  I don't know why but I really thought that was where you were headed.

I thought it was for people exactly like you!

[copyman]

sorry GO, i know you had posted in the past that you are stage 4 but i hope you are no where near a transplant? when in a situation like yours does your doc give you an idea how long before you would progress to the worst care scenerio? do you have any symptoms of cirrhosis? i hope something comes up for you and the rest of us SOON! i would not have much hope if it was not for the money that the rx companies can make on finding better rx. i know that money is the motivating factor here and that will keep them searching for the answer. best of luck to you.

[LindyK]

Everyone has already given you much information.  It can really feel devastating when you first find out especially if you cannot identify where you got it.  But as someone told me when I first came to this board - it really doesn't matter and there are more important things to worry about like learning everything you can.  The hardest part is waiting - for test results, appointments with specialists, etc.  I found out this past September when I donated blood in August.   Got a letter from the Red Cross, opened it the next morning as I was assisting my 11 yr old daughter with making breakfast and school lunch.  I didn't even know who the letter was from, just that the envelope was fat and I was curious.  So there I am, thankfully my back was to my daughter as I read it because then I had to "act" natural until I got her to school.  Went straight to my primary providers office with the letter and when they told me what it all meant I fell to pieces - sobbing all of the way out of the doctor's building, went back home, called my boss, still sobbing and told her about the letter.  I couldn't work at all that day.

So your feelings about this are very normal.  Things still seem surreal to me.  I also have been sick but for 2 years - docs didn't know what was wrong with me.   My alts have always been near the high range and once just a little over so no thought was given to it, I guess.

Take each day as it comes.  As others have said, being young gives you an advantage because your body is still strong.  And your body may very well clear itself, again, as the others have said.  Either way, stay with this board, look at the archives, go to every link that is mentioned.  I just had my first appt with the infectious disease specialist on Oct. 23 and still waiting on results from the lab.  I wouldn't have known the first thing of what he was talking about if I had not done my homework.

Hang in there.  You are not alone!

[Kristina0726]

Thank you.  I find myself crying off and on at work but at home I try and keep it strong.  I dont want my 3 year old asking Mommy whats wrong.  Last night I told my husband that I was going to bed and when I wake up in the morning everything is going to be back to normal.  I guess people have it alot worse but you never think it is going to happen to you, you know.  I didnt think ovarian cyst and Kidney stone would happen to me at 21 either so they always say God will not give you anything you can't handle. I am trying to think of this as something good will come of it and it will make me a better and stronger person.  

Have you tried any Herbals?  I ran across some websites of some and wondering if they work.

[Kalio1]

I know it doesn't seem like it yet but it does get easier. You go through the stages of grief, sadness, fear, anger, sometimes denial but in the end you said it perfectly, sometimes things just happen. Knowledge is power. Once I accepted this had happened to me, I got mad at it and decided I would fiht this virus. I have 3 kids and I want to be there for them as I know you want to be there for your kid(s) You stay strong! You can fight this thing! Positive thinking is very powerful! You sound like a very smart gal who has good support, you will get through this thing.

I think people advising you to see a Heptologist if possible or a Gastroentrologist if a liver doctor isn't available is a great idea. Most family docs refer hep c patients to them.

There are supplements and herbs some people say they benefit from, at this point before you have seen the doctor and with your liver enzymes high, I would wait on starting any new things. Let the doctor run all his tests and get the info first. You don't want to complicate the situation or mask any problems or increase any problems. Once you have all the tests completed you might consider them, that is just my opinion I am sure others will feel differently.
I have seen people visit here who had their enzymes go up with some supplements and I wouldn't want that to happen to you.
take care, glad you found this place.

[cheddarhead]

Hey, Kristina. Sorry to hear your news. it's never easy and always a punch in the stomach. If this is a new infection, and you're in an acute stage, if may take at least six months for you to fight it off.  About 15% of newly infected do clear the virus on their own. If it passes into the chronic stage, consider treating it right away. Generally you'll have a better chance of getting rid of the virus if you're newly infected, your viral load is low, and your liver is relatively undamaged.

Remember too that there's a tremendous amount that's known about HCV and a tremendous amount not known. Somewhere between 20-40% of us infected (I'm one of them) have no "known" transmission factor. By that I mean the common ways you always see listed. I was infected either from a dental or hospital visit (you rarely, if ever, see these listed as possible risks, but they are) in the summer of 2005 and had acute symptoms in early fall 2005. I hoped to clear the virus, but I didn't so I began treatment in June 2006.  

It doesn't matter how any one of us got this thing. It's how we handle it once we get over the intial shock and I suspect you'll do great! We'll all be pulling for you, Kristina!

[DragonSlayer45]

Reading one of your last posts I saw how said you found out. That is how many of us find out. You go to give a blood donation and then get the horrifying letter. We all were really scared. That is how I found out except that was in the early 90's. I went to my primary because I did not have a clue as to the difference between hep A, b, or C. The clown I had for a primary at the time evidently didn't know the diference either. He did a test and said yep you had it. i was like but I feel fine when did I have it. This clown told me it just means you were exposed to it at one time or another and have the anti-bodies, don't worry about it. Speed ahead about ten more years and I start feeling like dog doo and go to my doctor (different one) and said I shouldn't feel sick all the time (I was beginning to think I was becoming a hypocondriac) she starts testing me for epstein barr, lymes disease, chronic fatigue, when I finally mentioned that I had gotten this letter years ago from the red cross and what my previous doctor had said. I could tell by the look in her eyes that it was not good.

The moral of the story is relax and take your time to read everything you can. It will seem overwhelming at first but will all begin to make sense after reading. Another great site to go to is the caring ambassidors website http://www.hepcchallenge.org That site covers everything from information on the disease to varoius treatment methods, including herbal. it has a downloadable book for free that is extremely helpful. One word of advice is be careful of the websites that offer herbal cures and the like as they are selling you snake oil. Herbal medicines may help relieve inflamation (inflammation) but will not cure you.

[Pdilly]

Hello and welcome to the site.  You have received lots of good info.  You will find that there is alot of that on this board.  I too was scared shi(#*@SS.  Until I had my huband and kids checked (they are okay) I was in a panic mode.  Your best defense is to read and ask questions here.   There is alot of info on the net (be careful as there are some bad info too).  Anyway calm down is about all I can say.  Get a good GI or helptologist and find out how far along you are.  More than likely you will be able to wait until the new drug come out in a year or so.  Also, many of us don't know how we got it.  You finially get to the point it really does not matter and that you have to treat it anyway regardless.

[Kalio1]

I just want to add that the new drugs in trials now will have information about how well they work in a year or so, but the drugs will not be available for at least several years if they do get approval from the FDA which they do not have yet.

[FlGuy]

As things settle in and settle down for you, you'll realize that the term 'hcv' and the word 'normal' can exit in the same sentence without conflict.

[Kristina0726]

Thanks again for all the great advice. My other test results are in I am just waiting on the nurse to call me back with them.  I will let everybody know once I get that phone call (hopefully soon).  I have wrote down all the websites you guys have given to me and will go on and read them.  Thanks to all of you I have a lot of questions writen down to ask the nurse when she calls. I feel better today then I have the past couple of days.  I am alittle scared to hear the results but I know in the long run everything will be ok.  I know after next week when my son gets tested I will feel alot better, that is my biggest fear right now.  Hopefully within a hour or so I can let you know the results.  Thanks again for all your advice it really has helped more then you know.

[broncomoto]

Sorry to hear of your diagnosis.  I was diagnosed in 1987 and have never had a problem with it (other than between my ears).  Don't drink alcohol, don't take/smoke/snort any mind-altering substances (as they all must be filtered by the Liver).  If you must take a pain killer, use Tylenol as infrequently as possible, but if you don't do any of the no-nos above, you probably won't get headaches anyway.  By the way, without those substances (if this was even your thing anyway), you can have a great life!  Hang in there sweetie!