two treatments for hep c that didn't work

two treatments for hep c that didn't work... what's next

ga, hi and welcome to HealingWell. This forum is a great resourse for information and you may want to read old posts to gleen some information and education. The participants and our forum moderator are well versed in liver disease and will be able to help you find answers. A huge bonus to posting here is the compassion and empathy that you will receive. You can feel free to ask anything you like, you can vent, and you can get educated all at the same time. Again, we're glad you're here.

ga, NEVER EVER GIVE UP!!!!!!!!!!!!!!!!!!! What kind of diet is he on? How are his labs? What about the transplant list? What do the dr's say about other treatments and what options does he have? Do as much research on the net as you can and see what is offered and new. Ask the Dr for newer treatments and experimental drugs if they offer you little else. CaryF posts here quite a bit and she is extremely knowledgable about diets for liver disease. Prayer is wonderful and I encourage it but you have to be proactive too. I know you are both frustrated and tired but don't give up. Keep looking for answers. There are others that have posted and have had unsucessful treatment that are still going strong. Hopefully one of them will read your posts and have some suggestions for you. GOD Bless

He doesn't work..too tired most of the time, but also takes vicodin and that what keeps him going. He has been treated twice and the last Dr. is a liver transplant specialist/infectious hep c specialist. Second experimental treatment showed signs of improvement, but just for a short time. No swelling anywhere, but blood in stool for many years which is being checked with a upper GI and maybe a stint will be inserted if needed. High virial load isn't good! I will look for the book you've mentioned...Dr was no help with Social Security but still working on that. The side effects of treatment are really bad so I don't know how people keep jobs going through treatment. He is thinking about a third treatment... we'll see. Thanks much for all the info!

dansbrother, I will ask for the toxin count next dr.s visit and make sure he stays with his GI doctor. The S.S. battle is now going on the third year. The bleeding is not a large amount, but has been there a long time. If you know this stage what's the next stage? Just trying to be ahead of the battle!

ga, it sounds like you have received some good adice today. I would adivise your husband to get on a healthy diet, take his Rx'd meds, get on a mild exercise program (whatever is tolerable for him), keep ALL Dr's appointments, and stay away from anything that will adversly afect his liver in any way shape or form. I hope he can avoid early muscle wasting by doing a little bit of exercise even stationary or nonareobic. It seems that once the muscle wasting begins the patient has less and less energy. If his ammonia levels are decent then he will at least be clear headed most of the time. He needs to stay well hydrated so push water and other fluids. There is some controversy about how much protein liver patients should consume. Some Dr's go by the older theory that the protein hurts the patient, some newer theories say that they need the protein. So study up on that and look at both theories in detail. That way when you go to the Dr and ask about protein in his diet you will have the advantage of prior knowledge and can ask the Dr legitimate questions on one vs. the other. CaryF is right in that the diet to cleanse the liver is of the utmost importance. She has had first hand experience with it.

Hi ga,
Welcome to the forum. I've found it to be an amazing group with lifetimes of knowledge and caring.
I'm in a similar condition as your husband but less critical state. I have had Hep C for at least 30 years and am now at a point where I cannot work due to tiredness and mind-fog (ammonia). I have acites (abdominal fluids), varices (enlarged GI veins), enlarged spleen and low platelet count.
Based on my history and experience to date, I don't understand why your husband wouldn't be able to have a liver transplant. In my case, my Dr. cannot successfully treat me for the Hep C until I have a transplant. My low platelet count would be cut in half by the Interferon, causing a dangerous bleeding situation. While my new liver will become infected by the Hep C, this previously non-infected liver is easier to cure.
Perhaps I don't understand the impact of a high viral load but you may want to read the Pittsburg newspaper's (Tribune Review) March 2008 series on liver transplants. Setting aside the treatment aspects for a moment, there was an obvious difference of opinions as to when and who got transplants based on the goals of the individual transplant centers. For them, it is both a health and business decision.
Some centers made decisions based on staying inside the success rates expected by United Network for Organ Sharing, or UNOS, which sets organ allocation rules under contract with the federal government. Many centers will refuse to do complex transplants due to increased failure and complication rates, which might make their success rate look bad and disqualify them from certain insurance company 'approved lists'. You can see these success rates on the UNOS site.
At long last, my point is that you may want to get a second opinion from a doctor at a different transplant center. In my investigations, it is obvious that I can manipulate when my transplant occurs by the selection of particular transplant centers and doctors.
I hope that this is helpful, although I know that I am tossing you a handful. I hope that your husband doesn't give up - and that whatever occurs is successful. I'm sorry that you have to deal with so much. Hang in there.
Be well, John

JohnCT
Thanks so much for the information you've provided! We've been told so much by so many it's hard to decide whats right or wrong. I find it hard to believe that hep c isn't a common news health topic. You've given me some more hope to move forward. Don't worry... We gotten this far.. there's no giving up on my watch!
ga.