Not sure if he is still doing advocacy work in support of prisoners, but may be worth it to check out Dr Bennet Cecil in Kentucky.
Best of luck
I hope you're following this thread:
http://www.medhelp.org/posts/Hepatitis-C/mandamus/show/1964942
If it were me, I'd ask for a biopsy to assess the extent of my liver damage. I'd want to know how they will monitor me afterwards for complications. That was a real horror story about the inmate who almost died from internal bleeding. But I believe it because I've seen and heard about people dying in jail. After the biopsy, if I were stage 3 or 4, I would try to get treatment now. If I were stage 1 or 2, I'd wait to see if the prisons will be using the new drugs.
I did triple therapy with Incivek with no insurance through the LA County system. It starts with a visit to a county clinic and referrals to a county hospital. If that's what he ends up doing you might want to wait to get married so he can qualify as a low income patient. All my treatment was paid for including very expensive meds, labs, and dr. visits. But 7 years is a long time and who knows how it will work by then? Obamacare may change everything. Wishing you and your fiance well and I hope you find solutions to your dilemma.
Do you think you got infected through sex? Or could it be from coming into contact with his blood? (towels, cuts in the kitchen etc)... I read somewhere that the blood once out of the body remains infectious for a couple days or so? So even dried blood could contaminate you if it gets into your own blood stream...
I have to use protection anyways because I am not on the pill so condoms are a must and we would have to use them regardless of whether he was infected or not...
Thank you for sharing :) Glad your body cleared it out!!!
Aplologies for spelling errors..cannot type well on phone keyboard
My bf has hepatatis c and we found out in februart 2013..a lttle over a year onto our relationship. Yes, chances of transmission through ses is 1%. I tested positive for antobodes but negative for the virus, meaning I was infected but was lucky and my body cleared it on its own . Just be careful use protection.
I gather from everything you have shared that him getting a biopsy would be the best course of action at this point, in terms of monitoring disease progress and assessing need for treatment, correct?
You mentioned patients vital signs need to be monitored frequently for a few hours after procedure (and I doubt he will get that much attention from prison staff), so how dangerous is a liver biopsy?
It makes me a bit nervous to trust the prison doctors with this... Just a few weeks ago, they almost killed an inmate doing a prostate exam. Something ruptured during his exam and they didn't catch it. He was sent back to his cell and kept complaining to the guard he was feeling very bad and laid down on the floor screaming for medical attention but was ignored for many hours. The guard on duty ignored prison procedures/regulations. Finally when a new guard took over the shift, and heard him yelling for help, he sent him back to medical: They found he had been bleeding internally and was half an inch from DEATH... Had the shift taken place a couple hours later they would have found him dead on the floor of his cell. True story.
So you can understand why doing a somewhat risky procedure in prison makes me nervous and I'd rather resort to it only if really necessary.
So I guess the real question here to ponder is: What is our best course of action here?
Is it best to do the test now, even though it is not very likely he has extensive damage at this point? Or would it be better to wait a bit longer before having a biopsy (he has 7 years left to serve), so maybe wait another 3 or 4 and then do biopsy, assess damage then and if damage warrants treatment, do treatment then, before release? It would then be free of charge to him. If he needs treatment and wait until after release he may not be able to get it: He does not have ANY money (not even one dollar) and had no health insurance when he was incarcerated at 19 (15 years ago) so even if I was to get insurance for him now it would be considered a pre existing condition, correct? Treatment after release would be a problem. I may not be able to cover this cost and he certainly never will be able to, himself :( ...
Plus I am thinking that in a few years some new options for treatment may become available?
Under all above circumstances, what would you recommend doing (if it was you)? I want to devise a short term and long term plan of attack to deal with this infection best we can under the circumstances... And I want to be smart about the way we go about this. Any help appreciated.
I am glad that the prison system is testing inmates for infectious diseases.
1- How many times can one have a liver biopsy done?
Many times.
2- Is it painful (do they put you under? Local? or nothing?)
Most commonly a Percutaneous Biopsy requires local anesthesia (lidocaine) injected where the biopsy needle will enter the body and some patients may get some light sedation if they want it. Depends on the policy where the biopsy is done. The patient needs to breathe in or hold their breath when the biopsy needle is injected because the liver moves up and down with breathing. After the procedure vital signs must be frequently monitored for 2-3 hours while the patient lays on their side.
Some people have some pain others don't. The pain is nothing extreme but in worse case may require a sedative.
3- If one can only do a liver biopsy so often, would it not be better to wait a bit longer since he is "newly" infected, has no symptoms and low viral count... We don't want to jump the gun and be "trigger happy" if we only have one or two bullets in our gun, right?
"has no symptoms and low viral count" has nothing to do with how long he has been infected or how damaged his liver is. The vast majority of people with hep C have no idea when or how they were infected. The also have no symptoms. Only a liver biopsy will tell how advanced his liver disease is.
4- Can the other two methods (Fibroscan and Fibrosure) indicate liver fibrosis status without the need for a biosy? Or do you gave to perform all three in order to find out...
The Fibro test are not commonly available in the US. So it is very unlikely he will even have that option.
5- How often is it recommended to get a viral count (blood test) ? My generalist told me once every quarter, but he is not a specialist... Please chime in...
Viral load is an either or thing. If someone has a viral load they are chronically infected if no viral load they are not infected. Viral load can't be changed so measuring viral load monthly, quarterly, whatever is pointless. Your generalist appears to have no basic understanding of hepatitis C. The viral load test is used to measure the effectiveness of treatment. That is when it is used after the initial confirmation of chronic hepatitis C infection.
Hope this helps.
Hector
Another question. During his last medical visit, the prison nurse said he should get a biopsy to assess where his liver damage is at. She also added she is against them.
1- How many times can one have a liver biopsy done?
2- Is it painful (do they put you under? Local? or nothing?)
3- If one can only do a liver biopsy so often, would it not be better to wait a bit longer since he is "newly" infected, has no symptoms and low viral count... We don't want to jump the gun and be "trigger happy" if we only have one or two bullets in our gun, right?
4- Can the other two methods (Fibroscan and Fibrosure) indicate liver fibrosis status without the need for a biosy? Or do you gave to perform all three in order to find out...
5- How often is it recommended to get a viral count (blood test) ? My generalist told me once every quarter, but he is not a specialist... Please chime in...
Many thanks for your help and support.
He is regularly tested for HIV and Hep B and so far clean as a whistle.
So, 1 in 19,000? That's really music to my ears...
But I did read that saliva may contain the virus, on occasion. That information was posted on more than one HCV website... Perhaps it is outdated information?
Thank you so much for all the info. Luckily alcohol is prohibited in prison, but that doesn't stop the inmates from making their own pruno LOL... But no he has not been drinking at all since he found out he was infected.
Hepatitis C is not an STD. It is a BLOOD to BLOOD disease. Not through body fluids so all your question are not ways it is transmitted. It is passed from an infected persons blood to an unaffected persons blood. That is why IV needle use is the most effective way to transmit the virus. So if your sexual practices don't involve blood play you have nothing to worry about. Even if they do there are precautions you can take.
About a year ago was the largest study that looked at transmitting of hep C in monogamous couples. The chance of transmission by any sexual practice was 1 in 19,000.
Viral count has nothing to do with transmission rate.
Also I hope you are aware that HIV, hepatitis B are common in prison populations and are passed through body fluids.
As far as safe sex practices, that is something all adults need to sort out for themselves.
Hector
Hi,
http://hcvadvocate.org/hepatitis/factsheets_pdf/HCV%20Guide.pdf
Good link for basic info., including transmission.
1- French kissing and saliva exchange.
No risk unless you both have open bleeding sores in your mouths (how romantic, eh?)
2-Oral sex-no risk
3. Intercourse
While HCV can be spread sexually it is extremely rare and I suspect in those cases it was due to "rough sex", blood to blood. Myself and everyone who has posted about this issue from the forum have been sexually active (w/o condoms) with HCV and did not infect their partner. If you want to be super cautious with condoms then certainly there is no risk.
The viral counts are not pertinent to liver damage. Liver enzymes don't indicate liver damage either.
Biopsy, Fibroscan and Fibrosure (blood test) are the only way to really determine what stage he is at in terms of damage.
HCV is a slow acting virus so if he is sure he has only had it 7 years, he is likely fine.
In terms of patient confidentiality and the legal issues, I don't know and will leave that to someone else.
Good luck to you on your marriage and do keep in mind that at some point your fiance should seek treatment though if all the information is correct (and he is not drinking alcohol) he will have some time before it becomes a health problem.
All the best