Chucks seems to get worse at night in his sleep. He has tremmors and moans like he is in pain. He has been hospitalized a couple of times with the high ammonia levels. The first time scared the crap out of me. Was not prepared at all for that. I could wake him but he couldn't stay awake.

If you haven't taken beef out of his diet yet, try it. It has helped Chuck considerably.

God Bless
Sharon

Is he still in a coma??

Craig

Yes, has been since about 8 this morning.

Sharon, his hepatologist told him he could eat beef, after his first consult on the 19th. Guess I will be limiting his beef intake again.

Hep doc told him limiting beef was believed back in the 70's.

Denise

Weird, did the doctor say exactly what caused the coma?
Anyways, I am praying for his quick improvement.
Good luck!

Hmm, limiting beef is a myth IMHO.
Try pumping him up with B1 and ascorbic acid?

Ascorbic acid will neutralize the ammonia, B1.

I quote ....

For ammonia toxicity, varices, and fibrosis, vitamin C by mouth throughout the day could be considered. If the blood pH is maintained by the presence of ascorbic acid, ammonia will be neutralized as fast as it is encountered. The symptoms of scurvy will also be resolved. For those wishing to undertake a more aggressive therapy, consideration may be given to intravenous administration of sodium ascorbate. See References.
For encephalopathy, intravenous administration of thiamine has repeatedly been reported to be the treatment of choice.

The ascorbic acid should also be administered IV.

Ask your docs, can it hurt??

I do hope he gets out of this soon! My thoughts are with you and him.

Craig

OOOps sorry, the B1 will help with the encephalopathy.

They are not really sure what caused the coma. They think he might be going into liver failure. He has less than 20% of his liver left. They did a CAT scan which came out fine. His bilirubin was a 3.2. Also, they found THC in his urine. He hasn't smoked pot in about 30 years and even then it was only about once a month.

Doctor doesn't know why THC was in urine. Could be caused by something else.

Denise

The same thing happened to my husband twice and both times during the night or early morning. They said it was caused by infection. He didn't go completely out but kept making the same sound over and over. It scared me so bad. After a week in hospital he was OK. Some warning signs are to get him to hold his arms out with palms at right angles and see if his hands flap. If he stares for long periods without blinking involuntarily or slurs his words encephalopathy may be coming on. He's on lactulose 4 times a day too. I hope and pray your husband will be OK.

If this is what they call hepatic coma, Then yes it does come on over night. Illiminating beef and soya helps lots. Fruit juice fast help to flush the affending poisons from the diggestive tract. Prunes do the same as lactulose, Lactulose is good though. Good luck, Its certainly a tricky illness thats for sure.

Went to the hospital at about 11 this morning. Good news. He was awake and talking. Still a little shaky though. Doc thinks that it could have be caused by an infection, but not really sure. His ammonia level went down to 32, his glucose to 115 and his bilirubin went up a little to 3.7. His meld score also went down from 18 last week to a 12. Told us it can change from day to day.

Saw GI doc late this afternoon and mentioned that Lahey Clinic was going to send letter to us for an appt. for Nov. He said to make a call ASAP for the appt.

Also, Hep doc at Lahey said he should see a counselor to have it on record. There is really no proof that you have gone to AA.

Denise

Well, some good news then!

Really glad he came out of it. Did he have fever? That's why they thought my husband had infection.

He had no fever.

Thanks for all the suggestions. Will be trying them.

Thanks for everything.

Denise

This happened to my dad a few times. My understanding was it from raised ammonia and problems with electolytes. My dad had cirrhosis from bilary issues-not sure if that matters any. Also this was back in early 1980's. He would be out and then awake with H.E.-not remember my name or asking my mom if she ever met me. Then he'd be fine again. It was very scary for me watch. I was in my late teens, early 20's. I would think they are able to control it more now. He was seen at Lahey clinic and very pleased with them. His disease,PSC, was considered a rare disease at the time. I think the drs at Lahey helped to keep him alive longer than we thought they would be able to.