I would suggest you go to the liver transplant center nearest you. You may need a referral.
You will probably find the best and most up to date heptologists there.

you poor thing..i've heard of alot of successes with liver transplants lately it he should need one..you do need a realy good liver doc..bless you and your husband hugs

Did the doctors tell you anything about his prognosis? Did you ask about a transplant? Is he on any medication? I praying for both of you.

I asked about the prognosis the other day and they said "IF" his liver stays stable and doesn't progress, his could last another 20yrs. If not, they said they'd list him. He can't be listed until he reaches "C" on the Child-pugh scale. He isn't on any meds right now, but he has an appt this week and I expect them to possibly start him on something. He doesn't smoke or drink (2yrs clean). I'm just nervous. I'm a RN and I know just enough to be dangerous & scared...lol

Calm down, everything will be Ok! We are all cheering for you!

It sounds from your husbands confused states he may have encephalopathy. I am not sure of the level but some with this confusion when their amonia level is high take lactulose to help. Has your doctor mentioned this to you? I would follow up with Reeds advice in finding a specialist and at least getting on the transplant list. Your hubby is fortunate to have a supporive wife like you. I have you both in my prayers.

It sounds from your husbands confused states he may have encephalopathy. I am not sure of the level but some with this confusion when their amonia level is high take lactulose to help. Has your doctor mentioned this to you? I would follow up with Reeds advice in finding a specialist and at least getting on the transplant list. Your hubby is fortunate to have a supporive wife like you. I have you both in my prayers.

We just went through much of this with my sister who is not much older than your hubby. May I suggest you ask them to give him something to bring down the ammonia level. Even if its only on the high side of normal, it can still cause the fatique and confusion, etc. That is one of many little things I learned while trying to help my sister. Do not take no for an answer as you want him to feel better with as simple a treatments as possible and if this will help, why not?

My best to you and your husband.

I'm so sorry your going through this so early in your marriage. I'm sorry your going through this period. The best thing you can do to help your husband is to be patient an be there for him. I don't know what its like to be cirrhotic, but I understand everything your about to go through. Besides being overweight, my father was the healthiest person in the family. One day he felt sick and starting throwing up blood, lots of blood. His instinct was to lay down and sleep it off, our instinct was to goto the ER. If he had waited any longer he would have bled to death. They put a tube up his nose and down into his stomach to suck the blood out, then they performed an upper endoscopy to see what was causing the bleeding. They found esophageal vericies and concluded he has liver disease. A couple weeks later the biopsy and ultrasound confirmed. It's been almost five years. He has survived more than most people could. He's bled internally more times than I can count....more times than he should have made it through. He lost all the fat off of his frame and almost all of the muscle, one of the side effects of cirrhosis. His face is sunken in and the bones in his head pronounced. His abdomen filled with fluid, causing a lot of pain and the need for water pills. He had to get drained often, and the fluid always came back. That first time he bled was such a horrible experience, but still we were never prepared for what was to follow. Fluid retention (ascites, edema), esophageal bleeding, and muscle wasting are three of the four main side effects of liver cirrhosis. It's funny how somebody could have explained to me what would happen to him and I never would have believed it until I lived through it. The fourth main side effect is encephalopathy. It took us a long time to come to terms with this, and to accept that it was actually happening. One of the livers main functions is to filter the blood. With a cirrhotic liver, a person becomes poisoned with toxins a healthy liver would otherwise remove. These toxins poison the brain, limit mental ability, causing confusion, slurred speech, tiredness, nerve damage, and sometimes coma. If your husband's liver is in early stage, the encephalopathy is unlikely to become severe, but you need to be aware that this is probably what's happening. I've done the research and nobody really knows the exact mechanism of encephalopathy. What we do know is that it is related to ammonium levels, but to what extent nobody is really sure. One thing to keep in mind is that it's not the amount of ammonium in the blood stream that is important, its how much actually gets through the blood brain barrier (BBB.) I have read that in cirrhotics they think that toxins pass more readily through the blood brain barrier, so a normal level of ammonium might be enough for a cirrhotic to experience some level of tiredness, moodiness, confusion, etc. A couple things to consider: he might want to avoid red meat as it causes the greatest level of ammonium to accumulate, ad because the liver is the only place ammonium is processed in the body, ammonium is likely to accumulate, and this is just my guess, but it also might be taxing on the liver and cause his cirrhosis to progress father. Limiting protein in the general, is another way to try and manage encephalopathy. You might want to do some research and find out the recommended amount of protein for your husband's weight and activity level, and start there as a marker. If you still notice the confusion and tiredness, try a little bit less. It's trial and error. Another practice to incorporate is drinking only distilled water. This is water captured from the steam of boiled water. Its pure and less taxing on the liver. Also beware of any meds that are metabolized in the liver, tylonal is one. You should google it and keep a list. If I had liver disease I would avoid these meds at all costs. And my last piece of advice, if nothing else works, get your doctor to prescribe lactulose. When bacteria in the intestines break down they emit ammonia. Lactulose in a synthetic sugar that flushes these bacteria out of the system, reducing ammonium levels. It causes diarrhea and also has some other side effects that aren't too comfortable, but not everybody has the same experience. My dad hates to take it but I make him, because without it he's not really there with us.

I have so much more to say on the topic but I have said enough for now. Be strong and be patient. My heart is with you. It's a hard road that only love can get you through.

Be strong - I agree with the other posts - lactulose will probably help ALOT.... it is a true roller coaster ride with the ups and downs but once you can control the ammonia it is a little easier.

Thank you so much for all your replies. It really means a lot. This is really difficult for us both... God is literally carrying us through. Please keep in touch w/me as I go throug this. I feel so alone.

I really feel for you guys. The challenges you guys are about to face will be very difficult to deal with. It's a hard road caring for somebody with this disease. It plain breaks me down sometimes, but I promise you guys will be ok. Someday not too far from now Dr's are going to know how to fix this. I read that in Japan a scientist invented a drug that cured mice with cirrhosis. And in the US they grew an esophagus and transplanted it in a woman with cancer. Be strong and have patience. I'm here for you guys.

The ammonia level does cause these symptoms. You would think they(hosp/doctors) would have checked that right away.(ammonia level)??? A simple perscription of lactalose(sp?) would have helped if ammonia was the problem. I think you should ask about the ammonia level and lactalose. Good luck with finding a good liver doctor,it makes a huge difference in the care he'll receive.

Shellnsteve Hola! (primero lo siento por mi Ingls)
Creo amigos ejecute demasiado rpido .... ummm tu marido debe ser realmente malo para ser trasplantados. Su confussion probablemente ahora se presenta como algo natural porque todas las noticias son demasiado para cualquier persona.
La primera cosa que tiene que hacer es un tratamiento para borrar el virus VHC. No virus, no progresin de la enfermedad. Entonces tiene que ser una correcta nutricin (buscarlo en todo el foro googling o internet), no el estrs, el deporte moderado, y actitud positiva.
He estado en C nio en estadio de junio, ahora estoy en un nio.
Best wishes

Hi Shellnsteve! (first sorry for my English)
.... ummm your husband must be really bad to be transplanted. His confussion now probably comes as a natural thing because all the news is too much for anyone.
The first thing he has to do is a treatment to clear the virus HCV. No viruses, no progression of the disease. Then it must be a proper nutrition (look around the forum googling or internet), no stress, moderate sport, and positive attitude.
I have been in child C stadium in June, now I'm in A child.
Best wishes