[mysticalmusic]

My partner Tim has chronic liver disease. His liver is failing and each day he is heavy with fatigue. He also gets ammonia poisoning. His ammonia was 285 when he become so delirious he had to be put on a heavy dose of haldol to make him more comfortable and less compative. He takes all his medications.His last ammonia level was 22. You are supposed to be around 50 from what I understand.So this is awesome for him. It's a little low, so I don't know what that should mean? We are prepared for most anything. But for some reason he keeps having to go back to the hospital. Anymore incidents and he'll be taken off the liver list. He goes to a liver specialist at University of Washington Seattle. There is a team there that works with him. The medical support is great, but I want to know everything I can about this. I love this man and want him to make it to the liver list without dying from his symptoms! It is exhausting, frustrating, terrifying. The wait is horrifying. I'll survive. But I don't know if Tim will. Please help. I'll read all your caring concerns and suggestions. Thank You.

[Travelinglady]

I am so sorry, mysticalmusic. I wish I knew something to help. What do the doctors say about this ammonia buildup?

I do hope your partner will get better, so the liver transplant can be done.

I knew someone with encephalopathy - they survived. Trust in the doctors and prayer is all I can suggest. What about a living donor for a partial liver transplant?

[SnakeCharmer]

I was momentarily confused by your post. Encephalopathy means a disease or disorder of the brain. I'm going to guess Tim is suffering from hepatic encephalopathy, which means toxins are building up in his brain because his liver isn't working right.

You might try going to the National Institute of Health site. It's really good info. Here's a link.

Hepatic encephalopathy: MedlinePlus Medical Encyclopedia

Tim can have ammonia build up from simple things like not drinking enough water, eating too much protein, taking tranquilizers or antacids or having even one drink of alcohol. This information is directly from the government site. This is what it says about treating the encephalopathy:

Treatment

Hepatic encephalopathy can be a medical emergency that requires a hospital stay.

The first step is to identify and treat any factors that may have caused hepatic encephalopathy.

Gastrointestinal bleeding must be stopped. The intestines must be emptied of blood. Infections, kidney failure, and electrolyte abnormalities (especially potassium) need to be treated.

Life support may be necessary to help with breathing or blood circulation, particularly if the person is in a coma. The brain may swell, which can be life-threatening.

If the problem is very bad, you may need to cut down the protein in your diet. However, too little protein can cause malnutrition, so you should talk to a dietitian about how to change your diet. People who are very ill may need intravenous or tube feedings.

You may be given lactulose to prevent intestinal bacteria from creating ammonia and to remove blood from the intestines. You may also get neomycin to reduce ammonia production by intestinal bacteria. Rifaximin, a new antibiotic, is also effective in hepatic encephalopathy.

You may need to avoid sedatives, tranquilizers, and any other medicines that are broken down by the liver. Medicines containing ammonium (including certain antacids) should also be avoided. Your doctor may suggest other medicines and treatments. These may have varying results.
*****

You may need to talk directly to Tim's doctors to find out what you can do at home to help prevent Tim from having relapses. But the doctors can only talk to you with Tim's permission. He may have to sign a release of information.

If Tim drinks alcohol or takes sedatives or if he craves protein like meat, milk and eggs, he may become resistant, even angry about attempts to change those behaviors. I hope he will let you talk directly to his doctors and that, if necessary, you'll squeal on him if he's cheating or not following doctor's orders. Tim is responsible for his own actions and you can't force him, but encephalopathy means his brain gets foggy and he has episodes of not thinking straight. He'll need extra help at times.

It sounds like he's on the transplant list right now. My fingers are crossed for both of you.

[mysticalmusic]

Originally Posted by SnakeCharmer

I was momentarily confused by your post. Encephalopathy means a disease or disorder of the brain. I'm going to guess Tim is suffering from hepatic encephalopathy, which means toxins are building up in his brain because his liver isn't working right.

You might try going to the National Institute of Health site. It's really good info. Here's a link.

Hepatic encephalopathy: MedlinePlus Medical Encyclopedia

Tim can have ammonia build up from simple things like not drinking enough water, eating too much protein, taking tranquilizers or antacids or having even one drink of alcohol. This information is directly from the government site. This is what it says about treating the encephalopathy:

Treatment

Hepatic encephalopathy can be a medical emergency that requires a hospital stay.

The first step is to identify and treat any factors that may have caused hepatic encephalopathy.

Gastrointestinal bleeding must be stopped. The intestines must be emptied of blood. Infections, kidney failure, and electrolyte abnormalities (especially potassium) need to be treated.

Life support may be necessary to help with breathing or blood circulation, particularly if the person is in a coma. The brain may swell, which can be life-threatening.

If the problem is very bad, you may need to cut down the protein in your diet. However, too little protein can cause malnutrition, so you should talk to a dietitian about how to change your diet. People who are very ill may need intravenous or tube feedings.

You may be given lactulose to prevent intestinal bacteria from creating ammonia and to remove blood from the intestines. You may also get neomycin to reduce ammonia production by intestinal bacteria. Rifaximin, a new antibiotic, is also effective in hepatic encephalopathy.

You may need to avoid sedatives, tranquilizers, and any other medicines that are broken down by the liver. Medicines containing ammonium (including certain antacids) should also be avoided. Your doctor may suggest other medicines and treatments. These may have varying results.
*****

You may need to talk directly to Tim's doctors to find out what you can do at home to help prevent Tim from having relapses. But the doctors can only talk to you with Tim's permission. He may have to sign a release of information.

If Tim drinks alcohol or takes sedatives or if he craves protein like meat, milk and eggs, he may become resistant, even angry about attempts to change those behaviors. I hope he will let you talk directly to his doctors and that, if necessary, you'll squeal on him if he's cheating or not following doctor's orders. Tim is responsible for his own actions and you can't force him, but encephalopathy means his brain gets foggy and he has episodes of not thinking straight. He'll need extra help at times.

It sounds like he's on the transplant list right now. My fingers are crossed for both of you.

Thank you so much for this post. I am learning all the time about this chronic liver disease. I really appreciate the feedback. Yes, I meant hepatic encephalopathy.
But I just thought you called it encephalopathy. I didn't know there were a few kinds.
He just got out of the hospital again. he's been under extreme stress and ate 1/2 of a pastrami sandwich! That cause his ammonia to go up to 139 after he was sent home from the hospital. We had to go back to the ER and they gave him some zofran to stop the nausea. We take it as it comes. We enjoy out time together and are best of friends as well. I will do anything for this man. Everyone tells him how lucky he is to have a girlfriend like me. But I'm the lucky one. Without this man I wouldn't have done so well with my recovery from alcoholism and mental illness(schizoaffective and other mental issues). he taught me what love meant, and how to be faithful. And that you don't need drugs and alcohol to live life.
Thank you for caring enough to write this too me and sorry for getting back to you so late. Much love and peace out, Tanja or mysticalmusic.

[SnakeCharmer]

Dear Tanja, you and Tim sound like a love story for the ages.

I know a couple of people who've had liver transplants (each for a different cause.) I'm glad to say they are doing remarkably well.

The important thing now and while they were on the list was following an exemplary lifestyle. The little bit of pastrami shows that Tim is very sensitive. The people I know didn't really get with it until they were referred to a nutritionist or dietitian. It had to be someone who had the doctor's approval and who knew exactly what to do for the patient's particular condition.

It was a big shake up. It hardly seems that a couple little bites of a meat sandwich can do a person in, but it can. It took tough love from the doctor and guidance from the food specialist to get things on the right track. I'm something of a health nut and they asked my advice on what to eat, but I'm not qualified for that sort of thing. They needed expert advise from a professional.

Maybe you can get a referral for both of you to a qualified dietitian in your area. My thoughts will be with you.