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Avatar universal

Really Scared need insight.... has anyone been in my shoes???

Hey guys,

I'm brand new to the site. I'm a 27 year old male that contracted hep c through heroin use about ten years ago. About 6 years ago I had a biopsy done and they said I had stage one mild fibrosis. Since then I have not stopped drinking heavily on the weekends. I know how bad this is with hep c,  I know alot of people will say that has to stop and I know that. I know im idiotic, but its tough to do when you are young. I have been on suboxone for nearly a year now due to my relapsing but have not used heroin since. I have now hung up the drinking as well.

A couple days ago I realized that a couple of red spots on my face were actually spider nevi by pressing them under glass. I have also seen them on my trunk area after very hot showers. My only other symptoms are a bit of discomfort sometimes under my rib cage, some dry skin, and what I think may be brain fog.

I am EXTREMELY scared at this point because with these spider veins I'm just about 100% sure that I am cirrhotic at this point, and maybe in the later stages? I haven't done anything to treat this and I am going to schedule a doctors appointment very soon, just recieve healthcare at work. However, I am still just incredibly afraid that I have already sealed my fate with my prior carelessness and that I do not have many more years left.

If anyone out there has been in my shoes or has any feedback I would DEEPLY appreciate it! I am worried sick and kicking myself so much.  I am not looking for answers as to what my exact condition is and i know I need to see a doctor, I am simply looking for people who have been here that have insight. I am incredibly scared.
22 Responses
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6708370 tn?1471490210
It's a common thing that you would think MedHelp could fix

If someone is just cruising the net with a specific question, they end up with old posts/discussions

That's why I always look at the date before even opening the post

Welcome to the forum!
Helpful - 0
7469840 tn?1409845836
Hi Shari, your last 2 responses to posts were to people who haven't posted anything for a couple of years. If you have something to say, create a new post, or respond to a more current thread of discussion. Welcome to the forum.
Helpful - 0
Avatar universal
There is a new treatment for Hep C called Harvoni...you need to see a hepatologist  and find out where you are at.  You need to be followed by your doctor to manage your condition.  If you are at critical mass...you can only find out through testing and your doctor.  You must be good to your body.  it is struggling...stopping drinking is hard but if you have beat heroin you are up for it.  It is much easier than dying.  Please be good to yourself and get the help you need.  there are new medications out there now that can take it away with very little side affects.  I have taken Harvoni and no longer have the virus and I was on a transplant list in very serious condition.  you can do this.  Good luck...shari
Helpful - 0
4999712 tn?1362207779
Well thank you no need to post a new question, because u told me everything i needed to know, and yes i had the biposy my liver is in exellent condition, that's why im constantly asking how can i get rid off the virus because i have time on my side i will do another PRC just to check before i come to the USA and if it's still possitive i will take the treatment as soon as possible... Thank u again ;)
Helpful - 0
1840891 tn?1431547793
Can you ask your Serbian doctor to give you copies of all your lab reports? In the U.S. these are also kept at the medical offices, but they are legally required to give copies when asked, and most of us in this forum do find it very useful to have our own lab results easily at hand. You may have partially misunderstood what your doctor said about fighting off the virus. The truth is that approximately 20% of those who are exposed are able to fight it off with their own natural immune system. This typically occurs during the acute phase of infection, in the first six months after exposure. If the body succeeds in fighting it off the RNA PCR test will show UND (undetectable). If any virus is still detectable then your immune system has not been strong enough, and if its been more than six months then this is very unlikely to change. If it IS successful the antibody test will always continue to be positive, showing you were once exposed, but the PCR will be UND.

Assuming you are past the initial six months, the only way to eliminate the virus completely is through a standard treatment, which for genotype 2 means interferon and ribavirin. The protease inhibitors approved here in May 2011 are only used with genotype 1, as they have not been shown to offer any benefit in treating genotypes 2 or 3. There are other drugs now being studied which require no interferon, but they won't be approved for a couple more years. The interferon/ribavirin combo is pretty effective for genotype 2, and typically requires only 24 weeks of tx (many of us with genotype 1 have had to treat for 48 weeks).

You can get a lot of good and reliable information at http://hcvadvocate.org/hepatitis/factsheets.asp. Sorry it's not a live link – you'll have to copy and paste. Educate yourself as much as possible to ensure you are receiving the best possible care and advice, as we see far too many patients who are being treated by inadequately educated doctors, sometimes with very outdated information. If you are considering whether to treat now or wait, then you really should have a liver biopsy. It is by far the most accurate way to determine the status of your liver. Many of us (myself included) were counting on our liver being in good shape because all the other test results were excellent – but then the biopsy showed how inaccurate and deceptive the other tests can be and came back with cirrhosis. Once your liver gets to that stage it is much harder to treat the HCV, as tx is both less effective and more dangerous at the same time. It is also not believed to be able to regenerate once it goes that far. If your biopsy shows no damage then you can afford to wait a while, if it shows significant damage then you should not wait. If it shows mild damage the decision is harder to call.

Do eat healthy food and drink a lot of water. Avoid alcohol entirely, as it will greatly accelerate the damage done by the virus. Avoid NSAIDs and limit your intake of acetaminophen to no more than 2000 units per day. Be extremely careful about herbal "remedies". Most of them affect your wallet far more than they affect the virus, and a small number of them are quite toxic. My hepatologist grimly told me to especially avoid the Chinese herbal remedies after he had another Hepatitis C patient die after using one. Now I don't take anything new without specifically asking him first.

If you have good insurance coverage here then your tx costs are likely to be very minimal. I had to use three drugs and my actual costs were about $50/month. The necessary blood tests were more expensive, with my co-pay being about $400/month, but different insurance would treat that differently.

Again, I would suggest a posting your questions as "new questions" in order to get responses from more members. Good luck!
Helpful - 0
4999712 tn?1362207779
And thank u for the suporrt it means a lot to me since i'm alone in this fight...
Helpful - 0
4999712 tn?1362207779
In the USA i have a good insurance from my husband it's coverd 100%, but in Las Vegas i always had to pay something especialy when i was in imegrency...anyway yes my genotipe is 2, i can't tell you all my lab tests because they stay at my doc here in Serbia all i know is that my doc said to me that my imun system is very good and it's fighting the virus, i had PCR test and it was 120 copys of the virus so this is when i say low, my enzims are ok like evrything else in the blood test, all i'm saying is that the virus is not afecting me at all but at some point it could...All of the tests were abnormal when i started the rehab in serbia for heroin abuse, but after 5 mounts they were very good, and it's not the first time ppl do so good and that the imune system is fighting the virus, there are some alternative medicine tips that i use some teas and food recomended by the doctor and i can say it helps a lot, especialy by cleaning the blood and liver also, the problem is my doctor is the best infectologist in serbia he was doing the research for the new drug that you have in USA and we don't but if u say thah my genotipe can get trough the 2,3 genotipe treatment than it's fine..I also met a lot of ppl that had the virus and the imune system beated the virus byitself talking bout 2,3 genotipe, genotipe 1 is more problematic...I'm saying again i would go here for the treatment but i can't because there are some "rules" about hep c here to get the treatment u have to be in very bad situation whit the virus to get the treatment, and this is not my case...Juse tell me a prognosis i'm i doing good? Can i get rid of the virus? :))
Helpful - 0
1840891 tn?1431547793
Welcome to the forum! It is a great source of information regarding the virus and treatments, and a great source of support as well, but I don't know if anyone will be able to tell you the cost of treatment for someone paying fully in cash. Very expensive, but I don't know a number, as my insurance covered most of the cost for me. Maybe someone else will know, but you will be far more likely to get adequate attention to this question if you post it as a new question. Many people don't read to the bottom of older question threads.

When you do post it anew please try to include specific tests and exact results as reported by the labs, rather than giving generalities like low or high. Include as much as you can of the following: when you were diagnosed, what genotype you have, your actual viral load, any other blood tests with abnormal results (CBC, liver enzymes), ultrasound reports, and liver biopsy reports. All of these can make a difference - for instance, if you have genotype 2 or 3, then the protease inhibitor drugs are not helpful, and your best treatment option is just interferon and ribavirin. Include all you can, and people here are always happy to help!
Helpful - 0
4999712 tn?1362207779
Hi i'm new here i can see that some of u can really help me...Since i come from Serbia and have to go back to the USA i wanna know how much does the treatment for hep c costs? My PCR is very low my liver is very good my blood test are also very good, my infectologist told me that in this condiction the virus can get out byitself i also take good care of what i am eating and drinking...i found out just 5 mounth ago that i'm HCV positive but i think that i'm ceering it for 2 years...In Serbia there are no new drugs for hep c only ribavirin and interferon...So i decided to do take the treatment in USA in my alanysiz says INACTIVA Hep c this is also a good thing, but i  wanna get rid off that stupid virus and in Serbia you have to have a chronic hep c to get the treatment...So anybody whit answers for me?
Helpful - 0
1840891 tn?1431547793
Welcome to the forum! I wanted to second some of the previous advice you've gotten. Take some deep breaths and try to relax - Hepatitis C is a slow disease and you are very young still. Many of the things that are dreaming you out are not as significant as you fear. LOTS of people without Hepatitis C get spider nevi for instance, especially those with fair skin. I have had them for longer than I've had HCV, and they didn't suddenly get worse when my liver progressed to cirrhosis 9 years ago. Btw, in spite of having had HCV for decades and cirrhosis for 9 years my liver is still compensated and I've completed my third tx with probable SVR. I'll find out in about 3 weeks whether I've really beaten the virus. You are young and strong, and have excellent odds of beating the virus before it can do much damage, but you do have to have it all checked out and fully evaluated to know just where you are and decide what your next step will be. I'm sending you all my best wishes.
Helpful - 0
Avatar universal
I don't know where you live but if you are in or near a big city you may be able to find support groups. They may be filled with older people you may not relate to but they will give you a world of information that you may not be able to get otherwise. I would strongly recommend trying to find a support group. All you have to do is Google your area and you should find all the information you need......Good Luck....
Helpful - 0
766573 tn?1365166466



Bless your heart. You sound freaked since you used while you knew you had HCV. And like because of that your fibrosis has progressed to advanced stages. I think under those circumstances it is not unusual to imagine the worst. Seriously the only way to know for sure is to have a biopsy.

I did not discover I had the virus until I was in my 30's which mean I drank (and otherwise) when I was 27 as well. Lots of people on here probably engaged in that kind of behaviour given HCV can remain dormant for years - sometimes decades.

Helpful - 0
Avatar universal
Wow.....read Hector's post and follow it.   Education/information is your best ally.  No one, no one, no one, can say when, how, where, or why they got this virsus. There are hundreds of ways.  You can assume it was from this or that but that is a waste of time and energy.  You got it ... now stop playing the blame game and get busy to take the steps to fix it.

Everyone who gets this diagnois is in shock and denial. But you eventually have to face facts. The 1st doctor I saw gave me 30 days to get my affairs in order...that was over 20 yrs ago...I told him that wasn't acceptable and to get me someone with a proactive attitude...he did...and that Hepatologist started me on some trials...his best advise was..."you got it, you'll never be able to pin down how you got it...now lets do something about it...what do you have to lose."

They say the population born between 1945 and 1965 all should be tested for Hep C. I had small cute litte tattoos and had my ears pierced, shared shaving razors, traveled all over the world, played blood brother/sisters with my playmates when I was little, I had transfusions when I was 15, I worked as EMT in ER, etc, etc, etc.   I can't blame myself for life itself...for all the stupid things I did do or  didn't do.  

However the stupidest thing I didn't do was following through on some ot my doctors recommendations when I was first being treated...the old head in the sand routine...I kept right on living like I was...not adjusting my diet...didn't stop social drinking...plus I didn't educate myself as well as I could have.

And yes, this virsus can lay dormat in our systems...it could potentially be in someone right this second who will never have the outcome some of us had.  We can not blame ourselves that our bodies weren't as strong because of self-induced toxins or the enviroment make it weaker.  It was simply explained to me that your liver produces interferons. They inturn help the liver rid itself of toxins. The Hep C starts killing off the interfersons making the liver more suspectiable to the toxins.  That may be too simple an explanation but it works for me.  Your liver is an amazing part of your body machine.

There are state programs that will help you get treated.  This is a communiciable disease that the state agencies do track.  You come into this at a time when there is more possiblity of a cure then ever. You come into to this at a time when there is more information available to you than there was to others years ago.  

Your 27...gosh I wish I was 27.  You have the world ahead of you.  You sound bright and want to beat this.  Be proactive in your own health.  It's good that you are trying to stop drinking because that is bad for your liver.  

Go to a hepatologist.  They will run a complete blood panel  You can't guess what stage your  cirrohis is at by yourself.  And just so you know...there are millions of us out here in the US in those same shoes...so you aren't alone...this disease unforturnately does not get the media attention it needs and sometimes when it does, they, as many general practioners and nursing individuals are mis-informed.  That is why it is important for you to a hepatogolist.  

Glad you got a new job.  Just go ahead as if everything was status quo for you so that health insurance will pop in there for you.  Remember, you are under no obligation to share medical information with an employer.

Most of us out here work many, many years with, without and during treatment. There is a large % of health care workers in the US who have this virsus. Hep C is a blood to blood virsus....so you have to have had blood from an infected blood source come into your system....

This website has many learned posters who will give you website info to go to...they will encourage you to be under doctors care and follow through. I am relatively new to this site too and have learned so much from them. You will be able to tell eventually who has the real info and those who may just have a bone to pick.  Read as many posts as you can...I always find something that I didn't know in every post I read.

Good luck to you....please keep us posted.
Helpful - 0
4896357 tn?1360670904
There are several ways to get treated for free or almost free. Spend some time on the computer. Call people for help. Put some effort into it. You have to stop drinking. If you drink at all while preparing for, or during, tx, you are sabotaging your tx and taking away from someone who would love to have it and would work with it. Get the damn tx. I did and I did it with no insurance or Federal aid. You are so young. Put a year's effort into this and soon you can drink socially again. Otherwise you will end up like the thread about the 53 year old man who is not doing too well.
Helpful - 0
446474 tn?1446347682
You first need to relax and realize this is all stuff you made up in your own head. Liver disease, cirrhosis and spider veins do not occur the way you imagine so you should get some facts before thinking life is over at 27.

Diagnosing yourself based on no real knowledge of hepatitis C or liver disease is never a good idea.

See a gastroenterologist and have a biopsy. Get the facts and then base your actions on real facts. Why doom yourself  before you even get started. I got hep C when I was 17 and now I am 60. Hasn't killed me yet, so to think that it is the end of the world is really fantasy land.

See a gastro and get the facts. Then proceed according to what is real.

Good luck!
Hector
Helpful - 0
1652596 tn?1342011626
maybe you should look into a clinical trial.  i did and i had hep c for 37 years.  i went thru 48 weeks of tx and now i'm cured.  i reached SVR last november.  i'm 63 years old and feel good.  i had top caring people.  my study nurse was incredible.  i'm so grateful for their kind and loving care.  the best part was it was all free and i got paid for participating too.  good luck to you.  belle
Helpful - 0
Avatar universal
well i just wish that ppl on this site would explain exactly what all the different #'s mean.i dont understand what in the world everything means.i went to 1st gi dr on feb.20th,he said he couldnt help me cause of state insurance i have where i lost reg. insurnce.
he said i got hep c1a from blood transfusion i had when i was 9 MEANING i have had this for 29 years! what an idiot,but my legs are swelling now anf my feet are swelling.fam.dr put me on laxis yesterday.i think i either got this from my ex or from snorting coke 20 years ago.
but you need to get the ball rolling cause i am telling you i had to wait over 3 months for 1st specialists'sappt. then he said he wouldnt treat me not unless i could come up w/ 2000 dollars monthly for treatment.get those appts!i am still waiting for anyone to do a biopsy my next appt isnt til march 22nd w/ an actual hepatologist that works w/ free or medicaid pts.now i know WHY ppl. say their dr's kill them or their family doctors
but thats great you are not drinking also stay away from any over the counter pain meds too.i am in complete misery from leg pain but i havent even started treatment yet.i am very scared.i bet you are too. i will pray for yr sobriety.
Helpful - 0
4950316 tn?1394184585
Incidently your name comes up as a female, who has been a member since Sept. 2012. But never mind...............
I was first diagnosed about 30 years ago, and did not stop my party lifestyle. A year ago, my then husband got sick from HCV, and it was decided that he would go onto treatment first. He cleared, and three months later, a week ago,  I start. I waited also for the new treatments with better clearance rates. I too was stupid. I didn't stop my drinking then. I am now just lucky that I didn't do too much damage in those lost years, and although my liver is in rather bad shape, I'm finally doing the best thing for it.
No point worrying about what has been done. Finding out what you can do now is the best thing you could possibly do.
Helpful - 0
Avatar universal
I know, I am already looking at dr's to see. I am just really scared that I've done too much damage at this point.  
Helpful - 0
96938 tn?1189799858
They are not your shoes.  They are very well-worn shoes that have been worn by many before you.  You just happen to be the current resident.  See the doc and deal with it.  First time I saw the specialist the first thing he said was that "you have cirrhosis" by just seeing the spider nevi on my upper chest.  After all the testing, he was very close to being spot on(excuse the pun).  Like I said, deal with it before your motivation fades.
Helpful - 0
Avatar universal
Thats exactly what I am doing gopkrs. I appreciate the feedback very much. I am just very scared and hoping to hear from anyone thats been there with similar symptoms or situations themselves or know people who have.....
Helpful - 0
4856858 tn?1365378777
I would say that you should not jump to conclusions but that you should follow through and and see the doc. Find out what they find b4 thinking that you already know. And stop activity that harms your liver.
Helpful - 0
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