Hep C and Dialysis (and Diabetes, and Kidney Cyst...)

[frankswife]

Apparently Frank doesn't have enough challenges and needs one more. He has been positive for Hep C a long time, neither one of us are sure how long or how he got it. He thinks from blood he got transfused in the late 80's. His viral load was low and he had an ok liver biopsy in 2008. He had bloodwork done last week as part of the transplant listing process and apparently the viral load is now very high. They want him to see a heptologist and get another liver biopsy. From all I'm reading, there is really no acceptable Hep C treatment for dialysis patients. Has anyone gone through this? What happens if his liver is damaged? Can a relative give him a piece of thier liver? They regenerate, right? Oh God, I know I'm probably getting ahead of myself here but I'm panicking. Again. I guess we should have expected this. Nothing ever goes right for him. I would appreciate any advice.

[smcd23]

A relative could give him a piece of the liver, I am not 100% on it regenerating (I feel like it does, though) but I know it is entirely possible. I am not sure if they'd transplant him a liver though with the Hep C and other conditions. I know when my husband had his first transplant he was in the same room with a guy who had Hep C and a liver transplant, and he was basically there because the liver was rejecting or failing, and he could not get listed for another liver because of the Hep C. I am not sure if that would hold true for someone with a living donor (and please remember I am not saying any of this to scare or discourage you!)

They can't do interferon treatments on dialysis patients?

And don't get too worried just yet (and I know that's impossible but try!) because you can have acute and chronic Hep C attacks. And it could be he has something else going on and is in the midst of an acute attack and his liver is still okay. I assume he gets blood work done through dialysis, they haven't been or don't check his liver when they do monthly draws?

Please try not to worry too much until you have more testing done. I know, that's hard but you gotta try!  Hang in there!

[cariad]

The liver does regenerate, and very quickly apparently. I hope it doesn't come to the need for a liver transplant, though. They absolutely will do liver transplants on HepC patients - I do believe it is the number one cause for needing a liver transplant in the first place. It will depend on whether he could pass a liver transplant eval.

I'm so sorry this is happening and I hope there is a positive solution out there for him. Keep consulting with doctors until you find the right one that will guide you through this. Good luck. 

[smcd23]

Yeah I just asked Tony and he said the guy had multiple organ failure - kidney rejecting AND Hep C that had effected his liver, and there was no way he could get a liver quick enough or something, he had a lot of things going on, the Hep C just complicated matters for the poor guy. Tony of course has foggy memory of it all because he was in the middle of losing my kidney and I was already discharged, but I remember Tony's sister spent a bit of time talking to him, and it really just broke my heart hearing about it after, poor guy.

I am with Cariad - Keep talking with the doctors. Once he has the biopsy and some actual answers as to what is going on, do your homework and make sure the doctors know you've done your homework. Don't lose hope or worry too much until you know that there is definitely something to worry about. 

[frankswife]

Update on the liver situation. Turns out Frank's liver is relatively ok. Very little scarring detected. Now the doctor wants Frank to decide whether to treat the hep c or leave it. Apparently the treatment is 6-8 months long and very grueling, and worse for those on dialysis because they have to use different drugs than non-kidney patients. At the end of those months, he MAY be free of the virus. No guarantee. He's thinking, and leaning towards doing it.

[boswife]

its so hard when things just keep commen at ya.  I watch so many on here take it with ease, and i guess we did too but im finding myself falling harder each time and not having the great attitude i used to have   How do you feel about it?  I know its his dission but what do you lean towards?  Is it effecting him enough to want to go for it??  I'd be interested to hear how this goes with you guys.  blessings, and all the best to you....

[billybags]

frankswife , that is good news. I should imagine he will get lots of advise from his neph about what to do. Take care.

[frankswife]

Jill, I'd love to see him free of the virus, I just wish we knew that the treatment would do it for sure. The doc says it's about a 60% chance. He has no symptoms at all from the virus, and apparently the more sophisticated testing the heptologist did showed Frank's viral load is not as big as we were originally told. And also the treatment is really, REALLY bad, the doc couldn't stress that enough. It's a hard one, for sure.

[Whamo]

I got a liver biopsy 30 years ago that showed I had Hep C.  Last month I got the new biopsy test.  I was Stage One!  My doctor was amazed.  I've been taking "Liver Restore" and a super strong milk thistle.   I'm waiting for a protocol for treating Hep C if on dialysis.  The FDA hasn't made one yet, so the doctor
said come back in six months.

[Simon Dog]

There are a couple of new drugs that have a 99% cure rate for certain types of Hep-C.   I don't know if they are contraindicated in dialsyis patients, but the course of treatment runs about $95K.  It's been estimated that if everyone on the US who could benefit got these drugs, the cost of these drugs alone would exceed the entire current Medicare drug budget for the country.

[big777bill]

 Frankswife I just finished 6 months of Harvoni treatment for hep-c. I was clear after 3 weeks! I had a liver transplant on March 22, 2005 which was brought on by hep-c causing my liver to get cirrhosis.
I'm not going to go through all the trouble this caused but it almost killed me. By Feb. of 2012 I had to start dialysis, the prograf caused my kidneys to fail.  After going through evaluation for kidney transplant the Drs told me my liver was getting bad again from the hep-c. After a transplant the hep-c does not leave your body and it started to effect my liver after a month. We needed to get rid of the hep-c. My team of hepatologists finally decided to put me on Harvoni under close supervision. Blood work every week. They had never treated a dialysis patient for hep-c before. The treatment was hard on me but I was able to do the 6 months. Anemic the whole time and that was with taking EPO and iron regularly. Headaches and extreme fatigue. I had 4 hospital stays but it's all behind me now! Now we wait for labs at the 1, 3 and 6 month post treatment intervals. If I keep showing no detectable hep-c virus they will declare me cured! Hep-c almost took my life but I fought it for 30 years blow for blow. It won many battles but it looks like I might just win the war!

[Simon Dog]

Congratulations.   Did you manage to get private insurance or Medicare to pay for the Harvoni and, if so, how much of a fight did you have to put up?

[big777bill]

  Medicare part D paid part of it and the rest was covered by different charities and whatnot. My liver Drs took care of all of the calls and setting it up for me. It was at least 2 months to get approval for 3 months then when I was close to the 3 month mark they approved the next 3 months.

[frankswife]

Frank has an appt with his heptologist on the 17th to see about starting treatment. Medicare is primary and our private insurance secondary for him, so I'm hoping there's no problem covering the treatment course.

[Simon Dog]

Frank has an appt with his heptologist on the 17th to see about starting treatment. Medicare is primary and our private insurance secondary for him, so I'm hoping there's no problem covering the treatment course.

The treatment course is about $95K for three months worth of pills (Harvoni is about $1k/pill).

If you are willing to travel to India to visit a pharmacy, my MD tells he Harvoni goes for $4 a pill in that country.