Hi everyone. I just found out I am positive for HepC on Friday night my doctor called me and told me the news and said he is referring me to a gastroenterologist. I have no clue what to do or how to feel or what to tell my family. I am 26, still on parents insurance until mine from a new job becomes active. I have no prescription coverage just medical. Do I need to stop working? I am so overwhelmed by this and am dreading having to tell the family as they know I've used drugs in the past but I never touched needles. I know they will think I'm full of **** and just pass judgments and assume I did use and share needles and it's going to screw up my whole family relationship. I have no idea how or when I got it, how to go about moving forward in life, or what to expect. I'm pretty sure I have to stop drinking/smoking obviously but what is the treatment, if any? Please help with some info thank you
First, calm down and go to the gastro for good and correct information i.e. are you positive for Hep c or just the antibodies? Without much liver damage, he might have you put off treatment for a while, then you will have Ins. Next, I would tell the family as soon as I had the facts, everyone feels that way at first but they will still love you and be more concerned with what your going through and your well being than where it came from, believe me. I would not tell anyone else although most people will be understanding, As for smoking and drinking, you can kiss them good-bye for a long while, these are very hard on the liver. I found that part to be very refreshing, 'a cool drink of water', go ahead, you'll see. There will be much more and better advise posted soon so, put it to rest for a while and check back to see.
Good Luck, You will be surprised how it all works out
grizwald has good advice. No need to panic. It isn't the end of the world. You are the same person you were 2 weeks ago. You just might have received news that you will need to treat an infection. The the rest of us you can do treatment if needed.
From the information you provided we can't be 100% sure if you even have the virus. There are multiple blood tests that need to be done to confirm if you are currently infected.
Try to take it one step at a time. Slow down.
Your next step is to see the gastro. That is all you need to do.
Based on what they say you may have a next step.
There is no reason to get ahead of yourself. It only creates more worry and does nothing to chance anything.
Don't worry about insurance etc. We don't know if you are even currently infected.
As far as what others think. Most of us with hepatitis C can't say for sure when or where we got infected. It doesn't matter. If you get a sinus infection do you think it is because you are a bad person? No, you get an antibiotic and cure it. Same with hep C. It isn't your fault. Fault is something we make up in our own minds. Infection or disease just is. And the best thing to do is see a doctor that can help you manage of cure your condition. Morality has nothing to do with it.
I am sorry you are young so this is probably your first encounter with a disease. Everything we do the first time is scary. The is human nature. Us old folks (I'm 60) have been through other things so we are maybe a better prepared then you who is so young. So what you are going through is totally normal. Even us old people freak out when we are diagnosed. All I am trying to say is like the rest of us in time you will see that hepatitis C is not something to panic about. See the gastro and that will be your first step to curing the virus, if you are even infected. Hopefully maybe you aren't infected.
Here is a link to Hepatitis C basics that will tell you about hepatitis C.
You will be fine. Many of use on here have has the same experience you are having now. The unknown is scary. Once you learn about hepatitis C you will learn what to do the cure it.
I can imagine how freaked you must be. Still, Grizwald poses an important question you ought to consider. Actually I second everything he says ~ especially being certain you have all the facts.
There are two types of tests for Hepatitis C.
1) Hepatitis C Antibody (HCV Ab, anti-HCV). This test reveals If this test result is positive, it means your body was exposed to the hepatitis C virus and made antibodies.
2) HCV PCR RNA - looks for presence of the virus in your blood stream (i.e., you are actually infected).
The common, lesser expensive test most doctors and clinics often perform first is for the antibody. Ask the doctor to fax, email, snail mail or simply go by their office for a copy of you labs. Be sure it says HCV PCR RNA somewhere on the copy.
In the mean time you might want to stop drinking until you are sure.
Alcohol Facilitates Replication of the virus
If it turns out you actually have HCV the next step would be to maybe ask that doctor for a referral. You can test and see what genotype you are. After that you can take it from there.
In a few years or so treating the virus will be less ominous than it is now. There are trials and studies of highly efficacious oral treatments to treat the virus with a low side effect profile. There are many threads related to this on the forum and people who are treating and have treated with success.
Wow thank you all for the insight. I guess I'm freaking out when I shouldn't be. Just very shocked to learn this. Sorry for the delayed response as I'm at work right now. I just broke te news to my family and they seem to be very supportive already. I am going to speak with them this evening after work. I've scheduled and appointment with the gastroenterologist that my Dr recommended and refered me to and they are faxing over my blood work. My dr also informed me that based on the numbers and what he knows about Hep C, he said it looks like I haven't had it that long/it isn't too severe yet. He so said that every Hep C patient he has had in his career that he referred to this Gastro has been completely cured so I hope I fall in the same group. This is all new to me I've never had any kind of medical condition before except a severe head injury in 2010 which I am still dealing with. I hope this doesn't affect anything. I look forward to sharing and hearing experiences with everyone on here. I've browsed the forum a bit and it seems like a very strong group of people hping each other out so for that I'm very grateful. Thank you all, I'll keep you all posted for sure!
I'm really sorry to hear about the news you got from your Dr.
Like everyone else on here said, make sure you ACTUALLY have Hep C. Most Dr's just run an antibody test to screen for it. The antibody test doesn't say 100% if your positive, just if you have had some type of exposure. Ask your Dr to run a follow-up PCR test, which measures actual virus in the blood.
If he doesn't go to another Dr. Try to stay as calm as possible. For example, I actually contracted the virus and had it for a few years before my body managed to somehow get rid of it. Even though I don't have it anymore, my antibody tests all come back as positives since I was previously exposed to it. It's the PCR test that definitively says whether you have it or not.
Also, ask the Dr. for a copy of your bloodwork. I do everytime I goto the doctor. you can go down there and pick it up and see what tests he actually ran. If it is an antibody test, then there is still a chance you don't have it.
Thanks again all. I just got home from work and my blood test results were sent to me in the mail. I'm reading them but I have no idea what anything means. They tested for all the Heps and they all say negative, except C. For HepC it says "Hep C virus Ab >11.0 High s/co ratio 0.0 - 0.9".
Then it says below all that:
Judging by the word High I guess that means I got it in high amount?
I am sorry the doctor mislead you. This is a result from an HCV antibody test. It is reactive. *´★¸¸.☆ •*¨*•*Testing positive for the antibody does not mean you are infected with Hepatitis C. It only means at some point you were exposed to it and your body produced antibodies.
15-20% of those exposed the virus clear it through their own immune system (without treatment); the rest go on to have Chronic Hepatitis C
The next step is to see if their is presence of the virus in your blood system. ★☆ This test is HCV PCR RNA. ★☆ If this test detects the virus then it will mean you do indeed have Hepatitis C.
The CDC web site says the higher the S/CO ratio the more likely the virus so be sure to have the HCV RNA PCR.
It's totally okay to be freaked out. It's natural. It's fear and fear is actually our friend. Just say hello to it, name it and be nice to it and yourself, then do what you have to do at your own speed. You do need the HCV PCR RNA test. The results of that will tell you if you have active HCV or if you had contact with the virus but got rid of it yourself. You'll probably have to wait about a week for the PCR results, I think. I do. You'll worry even though worry is just about the most useless thing a person can do. Remember, no matter how things turn out, always ask questions, don't automatically accept advice from anyone no matter how many diplomas they have hanging on their walls, ask around, seek second opinions, give yourself and your feelings some space. The people here know so much, have experienced so much, and will always be happy to chew things over with you. Take good care and good luck! Vivian
Thank you everyone! You guys are great I'm very glad I signed up with this forum. I've made the appointment with the Gastro for next week so I guess I'll know soon enough. I spent all last night after work researching and discussing with my family (who it turns out were very supportive in trying to figure out how to go about dealing with this). It's just going to be a step by step and in will have to deal with each crossroad when I get there. I'll keep you all informed, thanks so much again!
Hi everyone sorry its been so long since I've updated you all. So I got the results back and I have Hep C genotype 1. My doctor says it is highly curable and because I'm so young I can decide when I want to start treatment as I am going to feel very sick, so if I had any ans or obligations, I could absolutely wait. I was thinking to start the treatment in the Fall as I just started this new job in January and don't want to star stripping up and becoming unreliable to early on. I also play in several bands and we are booking A LOT for the Spring and Summer already, some really good shows its good money. However, I think I've decided to just start the treatment asap and hope for the best. One of my concerns though is that, while not an addict by any means, I still do occasionally dabble with some drugs (no injecting of anything, just smoking or snorting). I'm worried that this will show up in blood work or get reported to my insurance. Can anyone tell me what to expect?
Test for your viral load (PCR) very very important , I thought that my life ended when i started getting sick , but today i'm up . Never give up , Never abandon the race ,Never you feel there's no more solution , always have hope , Nature will surprise you .
The first thing you need to do Is stop dabbling. You need you body as strong as possible. As far as what to expect... That depends on the treatment and how your body reacts it. Everyone if different. I am not up to date with the treatment options available today. It's so important for you take care of your body right now and dabbling shouldn't be one of your choices, at this time.
You'll do great, but I agree that dabbling will accelerate the liver disease progression. stay clean and keep insurance. Check out your options for a state or government insurance program. You can do this! Karen:)
Why, if you have cancer, you get nothing but sympathy but with hepatitis there is a stigma. Most of us don't know how we got it. Maybe just trying to help a friend who was bleeding. Go see your specialist. If he won't work with you in getting affordable treatment then find another. Get the treatment. I am not a fan of delaying treatment and living with this virus saturating our bodies. There are ways to get the drugs for free. If your work isn't really strenuous you should be able to keep working. Not get busy on the computer reading everything you can about hepC. Call and talk to people. There is so much help available. I was diagnosed in 9-12. Now I am in week 6 of treatment! Drugs are free. Doctor fees are minimal. Blood work is discounted. Good luck and I hope that your parents support you but if they don't then the heck with them!
I just saw your last update. I'm glad that your family is behind you. I'm going it alone. You will be fine delaying treatment until the fall. Just don't delay it for years waiting for better drugs. These drugs still have harsh side effects and approval is probably years away.There is no miracle cure on the horizon. This may become a "pre-existing" condition now though and could screw up your insurance but don't sweat it. There are ways to get quality treatment for free or inexpensively. If you are in SE Michigan I can give you some referrals.
My advice is to NOT treat if you are still "dabbling" with drugs. I would wait until you are done with drugs then treat. No sense going through treatment with a chance it not working because of recreational drugs. Keep in mind with Hep C your liver is under constant attack by the virus.
Best of luck
PS, snorting drugs is a risk of contracting and transmitting HCV. If you share straws or bills to snort you can infect others!
well dont freak out,its been4 long endearing months since i found out i had type1a.the only numbers i have been given is 367414-i guess viralload,i dont know,all i have been doin is reading these pages of medhelp after work,day after friggin day,maybe hepatologist will believe my pain,but now what i am tryin to get to is NOW its all just a waiting game,i have severe anxiety problems i dont know if its from the hepc or not but i have all been a very mentally and physically strong-minded person and then couple of years ago,something just snapped in me,but all its been for me is waiting game and i have been to one GI DR and all that happened is a referral to a hep, that treats low-income/or for free patients,he said he would treat but there's no way i could afford the meds-look for a dr that treats low-income patients if no insurance,there's a few or look into studies if you are next to a city or live in a city,but i just cant believe the lack of compassion i have received from the medical community when i know i have had this for at least 20 or longer
I don't want to derail this thread and you should probably start your own but you sound desperate. If you don't have insurance you can get the meds for free. Merck: 800-521-7157. I used Merck. Another is Vertex 855-837-8394. Now start looking for a gastroenterologist or hepatologist who will work with you on costs. Right now my viral load test is the most expensive part of my tx and I'm working on that. You need valium or xanax for your anxiety. If none of your doctors will prescribe it knowing your condition then you need a new dr. You are probably stuck with moderate doses of tylenol for the pain. Read other sites too. Google and read everything you can about hepc. Call people. Good luck. I was diagnosed in 9-12. Now I am in week 6 of triple therapy. Don't mix valium with narcotic pain killers if you happen to get both. Make it happen!
You GO Carlhcv!!! that's really good advice and straight to the point.
Your post should be one of the first post people see when they come
to Medhelp Hepatitis C Community forum. Bet lots of questions would
be answered and people could get the help they need lots faster.
TY. I am not an expert but this is a collective knowledge base and I have learned an awful lot about hepC in the last 5 months. Hector is the one I respect the most. Let's let LFDdrummer have her thread back. That's one reason I rarely post on the other forum anymore is that every thread would get hi-jacked. Good luck LFD. You can get treatment too.
no highjacking here but this person needs to know of all the waiting and the desperation of WHEN YOU GET DIAGNOSED it is not a perfect world but everyone needs to know or if they just have an opinion but i will keep my opinions to myself just my own experiences over the past 4 months-THE WAITING GAME-
4 months is about how long it took me to start getting tx. I am being tx'd by a respected gastroenterologist for minimal costs. I could have gotten it for almost free had I wanted to go to a low income medical center. You didn't hi-jack. I kind of did. I wanted you to know that you can get the drugs for free.
One of my concerns though is that, while not an addict by any means, I still do occasionally dabble with some drugs (no injecting of anything, just smoking or snorting). I'm worried that this will show up in blood work or get reported to my insurance. Can anyone tell me what to expect?
What part are you concerned your insurance will find out? I'm assuming your insurance already knows about your HCV since I am also assuming you are using insurance for the doctor visits & labs you have had so far.
Unless you are tested for specific drugs it is unlikely drug usage will show up in routine labs. Here's a drug test time table just in case (not sure how reliable it is):
I would want to know what stage of fibrosis I am before (or if) I decided to wait and treat. You are young though and you have a lot going on. I guess the one thing I suggest you do in the mean time is get vaccinated for Hepatitis A & B
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