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Hello, I'm hoping someone can help me. My fiance who is currently in prison (for a 3rd owi), was just informed that his liver enzymes were highly elavated and that he came back positive for Hepatitis C. They have been completely unhelpful with giving him any information about this at all. I'm not familiar with it either. Can someone PLEASE help me?
It looks like you’re getting some good advice here. I agree that Dr. Ben Cecil might be a good place to start; he has done quite a bit of prison advocacy for HCV patients, and might be able to guide you through the prison maize.
I also agree that this might be best handled outside the system; this is generally a slow moving disease. It’s quite common to wait up to six months to even get an appointment with a specialist, and possibly another six months to begin treatment, even with significant live damage and good insurance in force. It generally isn’t something that is rushed.
Don’t worry too much about the prison doctor’s decision to postpone treatment efforts for six months after the initial diagnosis. When a person is initially diagnosed, there is no way to determine when the disease was contracted; often prisoners contract HCV while incarcerated. Due to the nature of HCV, about 15 to 25% (roughly) of patients will clear the virus with the aid of there own immune response during the first six months of infection; the doctor could be hoping he is one of the fortunate people, and treatment won’t be necessary. After six months have passed, this is no longer in the picture; he will need to treat to eliminate the virus.
A very good resource to help understand the disease is Janis and Friends:
http://janis7hepc.com/
You might start by opening ‘newly diagnosed’ at the top of the page, or opening any item of interest in the right-hand margin.
Good luck to you both, and continue to ask questions here and elsewhere. Take care—
Bill
I also agree that this might be best handled outside the system; this is generally a slow moving disease. It’s quite common to wait up to six months to even get an appointment with a specialist, and possibly another six months to begin treatment, even with significant live damage and good insurance in force. It generally isn’t something that is rushed.
Don’t worry too much about the prison doctor’s decision to postpone treatment efforts for six months after the initial diagnosis. When a person is initially diagnosed, there is no way to determine when the disease was contracted; often prisoners contract HCV while incarcerated. Due to the nature of HCV, about 15 to 25% (roughly) of patients will clear the virus with the aid of there own immune response during the first six months of infection; the doctor could be hoping he is one of the fortunate people, and treatment won’t be necessary. After six months have passed, this is no longer in the picture; he will need to treat to eliminate the virus.
A very good resource to help understand the disease is Janis and Friends:
http://janis7hepc.com/
You might start by opening ‘newly diagnosed’ at the top of the page, or opening any item of interest in the right-hand margin.
Good luck to you both, and continue to ask questions here and elsewhere. Take care—
Bill
He might be able to get into a clinical trial. Or, sometimes arrangements can be made with the drug companies and they donate the meds (although you still have to cover the blood tests and any additional meds). But . . . my suggestion to you is to try not to panic, or worry too much. Via the internet, I've been watching people deal with discovering they have HepC for over six years now, and I can tell you that too often when they rush into treatment--or into anything--they find themselves treading water fast. You have a good amount of time to educate yourself and him. That's crucial. And waiting a year to start treatment is unlikely to be a problem for him. More important that he get his weight and BMI down because the meds will work better and also that he COMPLETELY STOP DRINKING because that is just awful for the liver, especially a liver that is fighting with this virus 24/7. They will not take him on a clinical trial if he is drinking.
I spent about six months doing copious amounts of research after I discovered I had HepC. One thing I can recommend--make sure that whatever you are reading is current. Do not even bother with reports/studies more than a couple of years old because the treatment and knowledge of treatment is constantly getting better.
I spent about six months doing copious amounts of research after I discovered I had HepC. One thing I can recommend--make sure that whatever you are reading is current. Do not even bother with reports/studies more than a couple of years old because the treatment and knowledge of treatment is constantly getting better.
We are praying he will be out by this Dec, if not then it will be Dec 2010 :(. I really don't know how to deal with any treatments as neither of us have insurance. I'm sure with this being new and all I am making everything way more of an emergency issue than it is, but at this point they don't even know how bad or how long he has had it (we are guessing 12 years). I may also just be making a bigger deal out of the whole thing in general as I am not really familiar with any of it. I'm just so confused and worried right now, I can't imagine what he is going through. I also can't imagine my life without him (we have been together for 10 years), he is father to my daughter, son to my mother and father, and an additional best friend to my best friend. We are all just in so much shock at this point.
You are absolutely welcome here. There are many people who come here who don't have HepC, but who are supporting someone who does have it.
Don't worry about the six months. HepC progresses slowly. Sounds like there is plenty for him to do in that time that will make treating the virus (if that's what he chooses to do) much better, like losing the extra weight.
You haven't said when he will be out, but it may be to his advantage to treat then when he has a choice of doctors. Also, there are some new drugs that are in clinical trials right now that are making it easier for people with some strains of the virus to get rid of it. I'm in one of those clinical trials. It is anticipated that those drugs will become FDA approved in 2010 or 2011.
Don't worry about the six months. HepC progresses slowly. Sounds like there is plenty for him to do in that time that will make treating the virus (if that's what he chooses to do) much better, like losing the extra weight.
You haven't said when he will be out, but it may be to his advantage to treat then when he has a choice of doctors. Also, there are some new drugs that are in clinical trials right now that are making it easier for people with some strains of the virus to get rid of it. I'm in one of those clinical trials. It is anticipated that those drugs will become FDA approved in 2010 or 2011.
Thank you for welcoming me here. I don't even know if I'm supposed to be here, but James is gathering info about this through me. They did not do any further testing other than the original test and then they tested liver enzymes (still a little confused on this one). They want to wait for 6 months before testing enzymes again...I wish they would do further tests :( . I have found coming here as a blessing through all these trials that we have been going through because it is the only place I can seem to get all the complete info that I've been looking for. Right now, everything just seems so dang hopeless between the fact that he is gone and now this....Here I go again...anyway, I'm just glad there are places like this for people to go.
I wanted to add that when testing for HepC-the first step is when the blood test is positive for the antibodies. The next step would be to get the RNA PCR which would determine the level of the virus in the blood----viral load, They would also at this point determine what genotype he is. Genotype determines length of tx. Viral load does not indicate liver damage and fluctuates quite a bit.
Some people-I believe maybe 20%- test positive for HepC antibodies, but have cleared the virus on their own. Once you have had hep C you will always test positive for the antibodies, but may not have a detectable viral load-meaning you have cleared the virus.
I apologize if I am repeating, I didnt see this info when reading above-but I am a bit brain fogged.
Bottom line-he will need to find out his genotype and viral load. That along with the biopsy results will be enough info to get you started on your decision to tx.
Wish you the best of luck. Keep asking questions and learning. Please keep us posted. And last but not least....Welcome to the Forum =)
Isobella
Some people-I believe maybe 20%- test positive for HepC antibodies, but have cleared the virus on their own. Once you have had hep C you will always test positive for the antibodies, but may not have a detectable viral load-meaning you have cleared the virus.
I apologize if I am repeating, I didnt see this info when reading above-but I am a bit brain fogged.
Bottom line-he will need to find out his genotype and viral load. That along with the biopsy results will be enough info to get you started on your decision to tx.
Wish you the best of luck. Keep asking questions and learning. Please keep us posted. And last but not least....Welcome to the Forum =)
Isobella
First welcome here and keep asking questions.
I agree with greatbird you should get tested
Also i would follow copymans advice and email Doctor Ben Cecil, not only is he a very good doctor but he has been an advocate for prisoners with Hepatitis C for many years.
I wish you and your fiance the very best........Stay well
I agree with greatbird you should get tested
Also i would follow copymans advice and email Doctor Ben Cecil, not only is he a very good doctor but he has been an advocate for prisoners with Hepatitis C for many years.
I wish you and your fiance the very best........Stay well
Thank you very much for your response. I plan on getting tested at some point, but right now I am more focused on helping him. Is this something that I should get tested for regularly when he finally gets to come home?
Yes, you should get tested. It is very unlikely that you have gotten it from him, but there is always the possibility. HepC is a blood-to-blood transmitted virus. Shared toothbrushes, razors, etc., are modes of transmission. I've been married to someone for twenty-seven years and he never got it--neither did my kids, but they ALL got tested.
You have been so helpful to me more so than any web site I have found thus far. Thank you for that! The Dr wants to wait to check his enzymes again before they decide to do any thing further. She did not give him any kind of advice at all about it at all nor did she really explain much to him, just sent him on his way. I have been informed that only 1% of ppl in prison are treated due to the cost of treatment, that in itself scares me. I guess I do have another question and intead of not wanting to ask, to me it seems rather silly, but I'll throw it out there anyway. I have not been tested..I have not shared needles or anything with him what-so-ever, however, we were living together, do people who generally live together get tested as well?
By "wait," what does the Dr. mean? She might want to retest his enzymes once she's sure he hasn't been drinking for a while. If you mean wait to start treatment, well, starting treatment is a big deal and you want to take time to understand it before beginning. There's usually no terrible rush to do anything specific about Hep C. It does advance, but it advances slowly. Generally patients have a liver biopsy before a decision to treat is made.
His weight does have an affect. If he loses weight it will help his metabolic functioning and the health of his liver. It is standard advice for patients with HCV.
You shouldn't hate to ask any question, and this last one is totally sensible – the answer is that some people do live with HCV their whole lives without complications. It's hard to know how many. The disease was only discovered in the 1980s. Most people with HCV are hitting their 50s and 60s now. It does look as if you can go a long time without any symptoms or liver damage. Then as you age, your immune system becomes less effective at battling the virus and the damage accelerates. Ten years from now, if there is no reliable cure, we're going to know a lot more about what happens to an elderly population with HCV. The thing is, it's not at all a good idea to stick your head in the sand and hope for the best. The one thing that HCV requires is a lot of education and knowledge. Even if you're someone with a relatively benign case, you need to be informed.
Oh, and one of the first things you do for someone with HCV is immunize them against Hep A and B. Since the liver is already compromised, to contract one of these could have serious consequences. The vaccines are effective.
His weight does have an affect. If he loses weight it will help his metabolic functioning and the health of his liver. It is standard advice for patients with HCV.
You shouldn't hate to ask any question, and this last one is totally sensible – the answer is that some people do live with HCV their whole lives without complications. It's hard to know how many. The disease was only discovered in the 1980s. Most people with HCV are hitting their 50s and 60s now. It does look as if you can go a long time without any symptoms or liver damage. Then as you age, your immune system becomes less effective at battling the virus and the damage accelerates. Ten years from now, if there is no reliable cure, we're going to know a lot more about what happens to an elderly population with HCV. The thing is, it's not at all a good idea to stick your head in the sand and hope for the best. The one thing that HCV requires is a lot of education and knowledge. Even if you're someone with a relatively benign case, you need to be informed.
Oh, and one of the first things you do for someone with HCV is immunize them against Hep A and B. Since the liver is already compromised, to contract one of these could have serious consequences. The vaccines are effective.
I want to thank all of you for giving me some information about this. I'm so worried about him. I pray that he truely does see now that continuing his self destructive behavior of drinking is basically setting himself up for a death sentence. I can't imagine why the Dr at Mt. Pleasant wants to wait for 6 months? Any idea? She already said his liver enzymes are really elevated (does that even mean anything regarding all of this?). James is a 6'5" big guy, and "yes" by big, I mean he needs to do something about his weight. Does his weight have any affect on this as well? I have been told that 3 days ago he did recieve shots for Hep A and Hep B (any one know the reason for this?). Next question I really hate asking....do some people live without any complications throughout their lives? I'm really sorry about all the questions, I really am, I just want to do what I can do to help him since he is having a hard time finding resourses where he is. Thank you, thank you, thank you.
Ooops, forgot the follow-up – Trinity, of course you are totally correct. How silly of me. It's a big, hairy needle. I've had two. One didn't hurt at all. The other hurt like all beejeezus.
There's one other thing to add – short of treatment there are no drugs available that slow down the damage to the liver caused by HCV. There's nothing you can take. The most important thing for patients with chronic HCV is to live a healthy lifestyle – eliminate alcohol and drugs, eat a balanced diet, and get regular exercise. If your finance is overweight, it's a good idea to drop to a normal weight.
He's got his hands full: he's basically gotten a message straight from the fates that if he keeps drinking he won't die in the long term, he'll have less time than that.
He's got his hands full: he's basically gotten a message straight from the fates that if he keeps drinking he won't die in the long term, he'll have less time than that.
"the most important is a liver biopsy. That's when a small needle is inserted into the liver and a column of liver tissue is removed and analyzed.'
Marc,
Not to be a pessimist, but I got a look at that sucker before they did the biopsy and it didn't look SMALL to me. LOL. It wasn't painful though. Actually, I didn't even feel anything.
Trin
Marc,
Not to be a pessimist, but I got a look at that sucker before they did the biopsy and it didn't look SMALL to me. LOL. It wasn't painful though. Actually, I didn't even feel anything.
Trin
HCV is a slow moving virus that mainly effects the liver. A certain percentage of people who have HCV go onto to develop cirrhosis of the liver and/or liver cancer which often have fatal outcomes.
The single most important lifestyle change that someone with HCV can make is to avoid anything more than the most minor social drinking. Someone diagnosed with HCV who engages in heavy drinking is engaging in extremely self-destructive behavior. The results are usually very bad.
There are a number of tests given to people with HCV, the most important is a liver biopsy. That's when a small needle is inserted into the liver and a column of liver tissue is removed and analyzed. This shows the degree of current liver damage. One would then make a decision whether to treat immediately or wait based on the severity of the liver damage.
Currently there is one approved treatment for curing HCV. It involves a combination of two drugs – pegalated interferon and ribiviron. The treatment has side effects not that different from chemo-therapy. It is also quite expensive. Depending on the strain of virus, a treatment can last from 24 to 72 weeks. And success rates are not that high for patients in some categories. There are newer treatments on the horizon that will hopefully shorten treatment times and improve success rates.
The single most important lifestyle change that someone with HCV can make is to avoid anything more than the most minor social drinking. Someone diagnosed with HCV who engages in heavy drinking is engaging in extremely self-destructive behavior. The results are usually very bad.
There are a number of tests given to people with HCV, the most important is a liver biopsy. That's when a small needle is inserted into the liver and a column of liver tissue is removed and analyzed. This shows the degree of current liver damage. One would then make a decision whether to treat immediately or wait based on the severity of the liver damage.
Currently there is one approved treatment for curing HCV. It involves a combination of two drugs – pegalated interferon and ribiviron. The treatment has side effects not that different from chemo-therapy. It is also quite expensive. Depending on the strain of virus, a treatment can last from 24 to 72 weeks. And success rates are not that high for patients in some categories. There are newer treatments on the horizon that will hopefully shorten treatment times and improve success rates.
I admit that James does have a very big problem with drinking, he says that with this 5 year sentence (the owi actually happened feb of 2007, he spent 6 months in treatment, but relapse, so now he is charged with violation of parole) as well as finding out about his health problems that he is set on remaining sober . I agree with you that I need to think hard about our relationship. I have informed him that I will not marry him unless he remains sober and stays out of trouble not only during his prison time, but also when he is released (I have told him it may take years for me to start trusting him again enough to marry him.).I have been married before and went through too much being married to someone with a drinking problem as well (whats really odd is, I myself dont drink). As for him informing himself about his health, he has no resourses in prison. They simply handed him a pamphlet that was 2 pages. I called the prison chaplin to talk a little bit to him about it and he says they really dont have any sort of resources at this time for him to education himself with either.
Honey, you've got some thinking to do. It's your fiancé's responsibility to inform himself about Hep C and what he needs to do to address his illness. Sounds to me like he's got to grow up in a lot of ways. Being jailed for a third time owi is wildly irresponsible. It puts many innocent people at risk.
If he has Hep C and is an unreformed alcoholic, he's got a pretty awful path ahead of him. I know it's not what you want to hear, but someone has to say it – you should not marry an alcoholic. No matter how much you think you love him. You should think about yourself.
If he has Hep C and is an unreformed alcoholic, he's got a pretty awful path ahead of him. I know it's not what you want to hear, but someone has to say it – you should not marry an alcoholic. No matter how much you think you love him. You should think about yourself.
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