Hep C Discussion Forum

Hello everyone.

My hubby David is the one taking the treatment but I am the techie so I am speaking for us. I wasn't sure if this is the right forum as opposed to the caregivers. I have decided to do both.

David contracted Hep C from a blood transfusion during surgery after a car accident in 1982. He was diagnosed in 1992 after tests as he was not feeling well. Myself and our two daughters were tested as a result. Everyone else was fine. We knew absolutely nothing about this at the time and were told that he would die with Hep C, not because of it. He eventually felt better and life went on with no thought of this beast.

In the summer of 2007 he was feeling more tired than usual and chalked it up to aging. I encouraged him to go to the doctor which he did. He tested for everything, everything that is except Hep C! It was only after his liver showed up as part of an Xray for something else did the problem surface. Two spots of cancer on his liver! It was then (through searching the internet and a whole other story on the riverbank) that we met the absolutely stellar team at Toronto General Hospital, part of the University Health Network.

He was told he needed a transplant. We were advised to talk to our relatives and friends about being a donor. How do you ask someone for part of their body? As it turned out our youngest daughter was the same blood type and she started the work up. It was a pretty emotional time for us. My husband didn't want her to do this and she wouldn't hear of anything else. We prayed for an answer to our dilema. And our prayers were answered. I was in Toronto with our daughter (4 hours away) for her final test results. She was an absolute match BUT they wouldn't accept her as her veins were crossed in such a way that they couldn't do the straight cut that they needed without putting her in danger. Donor and recipient are represented by two completely separate teams which have the best interest of their patient as priority. She was very upset when we went back to the hotel.

After an hour our phone rang in our room and it was a friend from BC. She had just got off the phone to David. She had called to find out what was going on and David explained it to her. She asked what his blood type was and she said that it was the same as hers as she had just had a physical. She made the decision there and then, called me at the hotel to get names and numbers of who to call which she did the next morning. Faxes and info were exchanged and she came to Toronto and between there and BC she did her workup and was a candidate. A surgery date was set for February 25, 2008. She was out in three days and David in twelve. There is alot more to this part of our story but this is not the place.

David has been well since then with an annual biopsy showing the Hep C appearing March 2009. In March of 2012 he was stage 2 and was started on Pegatron/Ribavirin May 17, 2012 and Victrelis June 25. He will do the Peg/Rib for 48 weeks and the Victrelis for 24.

He qualified for the Victrelis as he was treatment naive and we got Compassionate coverage from Merck, but it really is an unofficial study as he is one of 12 in Canada who is doing 3x treatment post transplant and Canada will only cover protease treatment for non-transplant. We wanted it as we felt it was available and France has 100's of positive outcomes. Canadian doctors are hoping that Frances studies will be accepted as sufficient evidence for other countries.

So back to the subject of this forum, he has done pretty good on the Peg/Rib, this being week seven. Very fatiqued, loss of appetite, a bit of brain fog. He started the Vic today and threw up an hour after the 7am and 3pm meds. His NP added 25 gm Gravol one hour before and he took that and his 11 pm meds and so far so good.

His viral load on May 14 was 5,970,000 and 47,900 June 18 so UND is our next goal.

I will wrap this up by saying that this site has been extremely helpful and encouraging for me and in turn David. Thank you to everyone for being there for other people. I have been looking for other post transplant info and being as it it just starting I thought our story would be of help to others. Perhaps a Post Transplant topic might be added .

Bye for now

EasternOntarioGirl