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living with a Hep C spouse
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living with a Hep C spouse

I have lived now with my husband  for 29 years who has  Hep C . For most of those years we had no Idea he had it. He contracted it during the Vietnam war through a transfusion (he was shot 7 times and lost a limb) That was before I even met him.When he was diagnosed , I can't tell you the fear I had for us both.. we have no children.. which i know  now it was never ment ... He has went through a liver transplant and the Drs negleted to mention it  will buy him only 10 years but so far it has givin him almost 13 ..but .. he is up for another  transplant they say in the near future..... his health has now gone down to  very poor condition  in the last 4 years or so ...He's  63 and I am 55... but he is a fighter and my hero .. I wish with  all that  I am ,they would find a CURE for  this.. so many millions suffer from it....  I'm not sure how easy it is to catch .. If anyone has this info , please let me know...  I have tested negative so far...
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Avatar_f_tn
I am sorry for your sad story and wish you and your husband well.  My doctor said HCV is more difficult to get than HIV  - but I have it and have no risk factors  whatsoever -  no transfusions, drug use, sex w/infected person- just a weird fluke.

So while there are "rules of thumb"  I guess it's just luck of the draw.

Best wishes


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87972_tn?1322664839
Hi there, and welcome to the discussion group. I’m sorry to hear of your husband’s situation; we do have others in here that are transplant survivors as well, so he’s in good company should he feel like talking in the group.

We’re told that HCV doesn’t transmit efficiently sexually, and the incidence of transmission is nearly non-existent across environmental surfaces/household transmission. However, sexual transmission can occur; it’s just very uncommon.

You should discuss this with his doctors so you fully understand risk and take appropriate measures, if they are even necessary. Many of us in here have been infected for decades and have not passed the disease on to partners, spouses or children; but this is anecdotal and you should hear this from a qualified medical doctor.

Good luck to both you and your husband—

Bill
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Avatar_f_tn
Me and my husband were married for 8 years and had a daughter before we found out about his disease. And the story like mine is very common one in hepatitis C community. My husband is also a veteran. He got hepatitis 27 years ago through air jet gun injection at the boot camp.

This disease is not easy to catch if you take common sense precautions-do not share toothbrushes and razors and in general be careful around his blood. We never changed anything about our sexual practices. If everything is OK with my husband's health, we would like to have another baby-and I have no fear at all about catching this disease. If I could, it would happen years ago. Personally, I think you should not worry about catching it either after all these years of married life.

I hope your husband will do fine and have many more happy and productive years.  
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Avatar_m_tn
Hi,

Sorry to hear your husband and you are going through this.

You said you wish they would find a cure for this disease. Not sure if your husbands doctor ever discussed treatment but there is a cure for Hep C.
Many transplant patients treat after receiving a new liver because the Hep C virus starts affecting the new liver after transplant.
Perhaps you should ask the doctor about treatment options?

Best of luck
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Avatar_f_tn
Sorry to hear about your situation.

One of the members here, Mikesimon, also had a liver transplant, treated for HCV, and is now clinically cured. He's a wondeful example for you and your husband that a big challenge can be faced head on and overcome. Hopefully, he'll see your post and share some words of wisdom, as someone who's been there.

There's also a liver transplant forum but I don't know how 'active' it is. Here's the link:

http://www.medhelp.org/forums/Transplants/show/230

I personally don't think you have to change any of your household practices. You got it down pat so far and I see no reason to be concerned now. Blood-to-blood contact is what to steer clear of and that's not that common an occurrence at home, despite all the little things that happen, like scrapes and nosebleeds.

Best of luck to you both.

Susan
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1225178_tn?1318984204
I am really surprised that the doctors that did the liver transplant on your husband didn't have him go on treatment after getting his new liver. Sounds negligent to me.

There are so many doctors out there who seem to think they know what they are doing when dealing with this disease, but in reality they know no more than they were taught in Med School, and since they didn't even know what hep c was till the early 90s.... You need a hepatologist, or at least a younger GI that treats lots of hep c patients...(an older one that keeps up with all the new stuff would be good too of course)

I hope things turn around for you two. Sounds like you have quite a positive attitude... that is good.

Diane
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897070_tn?1320656229
Not much to add except good luck !! Yes you are right your husband is a hero and I wish you all the very best.
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87972_tn?1322664839
Diane, I imagine Trese’s husband is being followed by his transplant team, so we’d have to assume they know what they’re doing; I imagine negligence is unlikely. There are any number of reasons a TP recipient could be intolerant of treatment; chronic rejection episodes, renal insufficiency, etc.

--Bill
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Avatar_f_tn
I sincerely wish you and your husband the very best moving forward.
Since you've been living together for 29 years , you know all the
precautions to take regarding blood.  I'm sure you will continue to test negative.
Yes, your husband is a hero !!!! All my very best to you both !

Diane,
These TP doctors are a specialized group, they are like no other.
It could be he tried TX and didn't clear.  There may be other reasons as well
that we don't know.  I highly doubt it is negligence Diane jeeezz.
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1225178_tn?1318984204
I hope you both are right. Her comment about there not being a cure made me think that they hadn't been informed that there was a cure for some, and if that is so... its questionable in my mind. There are bad doctors in every area, just like there are good ones.
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Avatar_f_tn
You don't understand how the Transplant system
works.  This is not just one doctor..you have a team.
You see a few doctors a week if not more, once you're listed.
They are highly specialized in TP's at least that's
my experience in this area. I never met one bad
doctor in this area. Quite the contrary. I'll say no more
however, say what you will, I just wanted the truth out there.
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Avatar_m_tn
I agree with the above comments that the risk of transmission isn't anything to worry about as long as you use common sense.
Treating hepatitis c after transplantation is not a well settled issue. Many transplant centers - probably a significant majority of centers - delay treatment until there is histological evidence of hepatitis c recurrence. That means that, until there is biopsy proven fibrosis attributable to HCV, treatment is not recommended. Transplant recipients have serious tolerability problems with treatment for several reasons. And generally doctors are not comfortable prescribing the optimal doses of interferon and/or ribavirin and patients are often unable to tolerate optimal doses. Acute organ rejection can also be a risk with treatment. I don't believe it is has proved to be as significant a threat as was thought but, it can and does happen. At this time there is no clear cut approach for addressing HCV post transplant so I disagree with the poster who suggested that your husband's doctor is guilty of negligence. That allegation is absolutely baseless and irresponsible on the basis of what you've said here.
I treated shortly after transplant because there was evidence of fibrosis very soon post transplant. This was in 2000 and I believe that at the time it was believed that treatment, even with inadequate doses, would halt the progression of fibrosis. After 2 unsuccessful attempts at treatment I finally received the right doses and became and remained undetectable after a lengthy treatment - 73 weeks. I stopped treatment in June 2004 and am still undetectable - SVR.
I believe that odds of success for genotype 1 after transplant is somewhere between 22% and 33% but the numbers may have improved recently. I am hopeful that the new protease inhibitors expected in 2011 will play a significant role in treatment post-transplant and that the odds of success will improve dramatically.
I wish you and your husband the very best.

Mike
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1225178_tn?1318984204
Just curious... Has your husband been dealing with the same transplant team since his previous transplant 13 years ago? Did they tell you there was a treatment for HCV but that your husband couldn't take it for some reason?

Diane
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179856_tn?1333550962
Dear Trese

Mikesimon is one of the most knowledgable members of this forum. (in addition to) Having been personally through this experience himself, I would suggest with my whole heart that you listen to his advice and pretty much ignore advice of those who have no conception about transplant at all. This is a serious situation and NOT something people should guess at to try and sound smart - but they will.  We had this problem over on the transplant forum a few times (where I hardly ever said anything having not been through transplant or experienced any of this) with people popping up who talked out their uh....behinds.  Please listen to those who have EXPERIENCE in this matter and ignore the rest. Well not the well wishes though cause they are important!!!!!!
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