Aa
hepatic encepth.
My spouse has stage 4 cirrohosis, with hep. C genotype 1b. He took the treatments back in 2008, but didn't work for him. He is currently taking Xifaxan for the hepatic encepth.(sp). But now he has become very confused, foggy, and is on a emotional roller coaster. He is jaundice, and has lost weight. Does anyone know of any support groups, or where we can turn to...its tearing our family apart.
As always...very excellent info from some special MH members...:)
I am very sorry for your loved one's condition. We are here to support you too as the caretaker and spouse this can be a difficult time for you too.
I cannot add any medical information, but just want to let you know that you are not alone!
Best Wishes,
Laura
I am very sorry for your loved one's condition. We are here to support you too as the caretaker and spouse this can be a difficult time for you too.
I cannot add any medical information, but just want to let you know that you are not alone!
Best Wishes,
Laura
Although Hector already mentioned this in his informative post, I want to repeat~your husband should not eat any red meat.
It will only make his confusion worse.
When I had encephalopathy, as long as I didn't eat red meat, and took lactulose daily, I might have been a little fuzzy but I never became disorientated.
Good luck.
It will only make his confusion worse.
When I had encephalopathy, as long as I didn't eat red meat, and took lactulose daily, I might have been a little fuzzy but I never became disorientated.
Good luck.
Thank you so much, as always your information was very helpful
You are a wonderful person with so much to offer. I wish you the very best possible
Cheers!
Dee
You are a wonderful person with so much to offer. I wish you the very best possible
Cheers!
Dee
I am sorry to hear of your spouse's issues with hepatic encephalopathy (HE) and it is so troubling to everyone involved. End-Stage Liver Disease is a horrible illness not only for the patient who is suffering both the physical and mental aspects of the disease but it affects all of their loved one too. To see someone we have known change both physically and mentally is quite frightening. To see someone who we have known as an independent person become more and more helpless is very difficult for anyone to deal with. I hope your spouse is able to get a liver transplant which will restore them back to the person they once were. A transplant will reverse of of the complications of liver disease they are now suffering with.
Although it is frightening, please understand that HE is one the most common complications of advanced cirrhosis. Being jaundiced and losing muscle mass are also both typical complication of End-Stage Liver Disease as well. When the liver is damaged so much that it can't perform its many functions properly complications appear throughout the body. This is why your spouse is suffering from so many different conditions. The liver regulates all these systems and when it is no longer able to do so the brain is poisoned by toxins that the liver normally filters out of the blood (HE). Bilirubin builds up in the blood rather than being filtered out by the liver (Jaundice). The patient losses muscle mass and weight because the liver is no longer able to metabolize proteins properly from food and patients are lose their appetite.
All patients with decompensated cirrhosis need to be treated by a hepatologist at a liver transplant center. They have the knowledge, experience and resources to manage End-Stage Liver Disease.
Is your spouse on a transplant list?
What is their MELD score?
The best support you can receive is at a liver transplant center. Many transplant centers have support groups for patients and their caregivers. Caregivers have a very difficult task caring for someone with End-Stage Liver Disease. The best resource is to talk with other caregivers that either are going through the same process or have been through the process of caring for a person that can have many life-threatening complications due to their liver disease. When patients are listed for transplant they will be given a telephone number for the transplant coordinator and nursing services, they should be able to answer any medical questions you might have. The transplant center also has social workers that can assist you in finding other support services that may be available in your area outside of the hospital. If you would provide your location I may be able to assist you in finding resources for you.
Regarding HE...you mention your spouse is taking Xifaxan (Rifaximin). They should be taking 550 mg twice a day. They should also be taking Lactulose which is the first line of treatment for HE. They should take enough to have 3-4 bowel movements per day to prevent the buildup of toxins in their GI track. No red meat should be eaten as it digestion produces lots of toxins. Chicken and cooked fish along with vegetable protein is important to have. For patients that have difficulties with appetite, drinks like Ensure provide the needed protein that can help prevent muscle wasting. It is important that the person is never left alone, as they can go into a coma when HE becomes servere. This is extremely dangerous and can lead to death. If they ever go into a coma where you can't awaken them, you need to take them to an ER immediately. This is a life-threatening condition.
All of this information of HE and the other complications of liver disease should be given to you by the treating hepatologist. End-Stage Liver Disease is a very complicated illness and each patient has there own particular manifestations of the disease. So the patient's hepatologist is always the best source of information about there condition. If you have any particular questions about Liver Disease and its treatment I will be happy to answer them.
Thank you for writing. Remember you are not alone in this. There are 17,000 patients in the US waiting for liver transplants and many families are going through the same challenges you are. I hope you can connect with other caregivers and share your concerns, fears, questions and experience with others.
Hector
Although it is frightening, please understand that HE is one the most common complications of advanced cirrhosis. Being jaundiced and losing muscle mass are also both typical complication of End-Stage Liver Disease as well. When the liver is damaged so much that it can't perform its many functions properly complications appear throughout the body. This is why your spouse is suffering from so many different conditions. The liver regulates all these systems and when it is no longer able to do so the brain is poisoned by toxins that the liver normally filters out of the blood (HE). Bilirubin builds up in the blood rather than being filtered out by the liver (Jaundice). The patient losses muscle mass and weight because the liver is no longer able to metabolize proteins properly from food and patients are lose their appetite.
All patients with decompensated cirrhosis need to be treated by a hepatologist at a liver transplant center. They have the knowledge, experience and resources to manage End-Stage Liver Disease.
Is your spouse on a transplant list?
What is their MELD score?
The best support you can receive is at a liver transplant center. Many transplant centers have support groups for patients and their caregivers. Caregivers have a very difficult task caring for someone with End-Stage Liver Disease. The best resource is to talk with other caregivers that either are going through the same process or have been through the process of caring for a person that can have many life-threatening complications due to their liver disease. When patients are listed for transplant they will be given a telephone number for the transplant coordinator and nursing services, they should be able to answer any medical questions you might have. The transplant center also has social workers that can assist you in finding other support services that may be available in your area outside of the hospital. If you would provide your location I may be able to assist you in finding resources for you.
Regarding HE...you mention your spouse is taking Xifaxan (Rifaximin). They should be taking 550 mg twice a day. They should also be taking Lactulose which is the first line of treatment for HE. They should take enough to have 3-4 bowel movements per day to prevent the buildup of toxins in their GI track. No red meat should be eaten as it digestion produces lots of toxins. Chicken and cooked fish along with vegetable protein is important to have. For patients that have difficulties with appetite, drinks like Ensure provide the needed protein that can help prevent muscle wasting. It is important that the person is never left alone, as they can go into a coma when HE becomes servere. This is extremely dangerous and can lead to death. If they ever go into a coma where you can't awaken them, you need to take them to an ER immediately. This is a life-threatening condition.
All of this information of HE and the other complications of liver disease should be given to you by the treating hepatologist. End-Stage Liver Disease is a very complicated illness and each patient has there own particular manifestations of the disease. So the patient's hepatologist is always the best source of information about there condition. If you have any particular questions about Liver Disease and its treatment I will be happy to answer them.
Thank you for writing. Remember you are not alone in this. There are 17,000 patients in the US waiting for liver transplants and many families are going through the same challenges you are. I hope you can connect with other caregivers and share your concerns, fears, questions and experience with others.
Hector
Hello, I am so very sorry to hear this news. I would say that he needs to be evaluated by his doctor right away. These symptoms do not sound good at all.
I am sure Hector will be here to help soon.
I take lactulose though it seems I need less now.
Again I would take him someplace right away, even if you have to go to the ER
Best of luck to you and your husband
I am sure Hector will be here to help soon.
I take lactulose though it seems I need less now.
Again I would take him someplace right away, even if you have to go to the ER
Best of luck to you and your husband
Your question are definitly welcome here but there is also a new cirrhosis forum as well, I wish you and your husband all the best.
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
I'm afraid I don't know very much about cirrhosis, but there are some very knowledgeable people on this site who should be able to give you good guidance. HectorSF will almost certainly chime in, he is extremely knowledgeable and supportive.
It really sounds like you need to consult with your hepatologist immediately, there are other meds that your husband can be taking to help offset the symptoms of decompensated cirrhosis. I'm so sorry you're dealing with this, it must be very stressful.
It really sounds like you need to consult with your hepatologist immediately, there are other meds that your husband can be taking to help offset the symptoms of decompensated cirrhosis. I'm so sorry you're dealing with this, it must be very stressful.
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