I am very sorry about your ex husband's condition.
I advise you to post your questions on the cirrhosis forum, there are people on that board who are better informed about end stage liver disease.
All the best
I am so sorry to hear of your troubles, from what I know, and it isn't much, it takes time for the tx for high ammonia to start working.
I think you should notice a change for the better the longer he is being treated for the high ammonia
Sorry to hear about your husband.
Is he being cared for at a liver transplant center?
If not then the doctors are not experienced in managing hepatic encephalopathy. That could be the problem.
Encephalopathy is trigger by many things as long as that is going on he will continue to have encephalopathy.
• Any use of narcotics or sedatives.
• Infection: Although infection involving almost any site, including the urinary tract and lungs, many trigger hepatic encephalopathy in patients with advanced cirrhosis, infection of ascites (abdominal fluid) - called spontaneous bacterial peritonitis (SBP) - is one of the most frequent triggers of encephalopathy. Sampling ascites fluid using a needle, a procedure called paracentesis, is required to determine if SBP is present.
• Gastrointestinal bleeding: Patients with cirrhosis frequently suffer from bleeding in the digestive tract, usually from dilated veins in the esophagus (esophageal varices). Digested blood represents a large protein load in the gut which can lead to higher levels of ammonia and other toxins and, not surprisingly, hepatic encephalopathy is frequent in this setting.
• Medications: Drugs that suppress the central nervous system, particularly opiate pain medications (e.g., codeine) and benzodiazepines (e.g. diazepam, lorazepam), may trigger hepatic encephalopathy.
• Electrolyte problems: Low serum sodium (hyponatremia) and potassium (hypokalemia) are common in cirrhotic patients treated with diuretics and both can worsen hepatic encephalopathy. Hypokalemia appears to exacerbate encephalopathy in part by stimulating ammonia production from the kidneys.
• Dietary indiscretion: Excessive consumption of protein, particularly from large red meat meals, seems to exacerbate hepatic encephalopathy in occasional patients, but this appears to represent a relatively rare trigger of severe encephalopathy.
• Constipation: Slow transit of stool through the gut appears to increase the time for bacteria digest foodstuffs and make ammonia and other toxins, potentially triggering hepatic encephalopathy.
• Kidney failure: Dehydration from diuretic therapy and diarrhea, infection, some medications, and progression of liver disease can all lead to kidney failure, which in turn leads to decreased clearance of urea, ammonia, and other toxins that can contribute to encephalopathy.
• Other factors: A rise of blood pH (alkalosis), which often results from diuretics and resulting dehydration, may facilitate entry of ammonia into the brain and exacerbate encephalopathy.
Only transplant center doctors know how to determine these issues and manage them.
Also ammonia levels do not equate exactly to the amount of encephalopathy. So the actual number don't matter. It is the symptoms that tell how servere encephalopathy is not blood levels per se.
So the bottom line is only with adequate and appropriate care from doctors who work with patients with end-stage liver disease can his encephalopathy be managed to the best degree possible.
"he just sleeps a lot."
Sleeping, stupor and coma are all typical signs of encephalopathy.
You should ask the doctor if you have questions.
"I need to know what to expect?"
Only a doctor treating your husband can tell you that.
Best of luck to you both.
a year or so ago, i had multiple periods of deliriums; the longest of which lasted 4 days. My ammonia levels were off the chart, but no coma. In my experience the treating of the ammonia level (Xifaxin and Lactulose) took me 4 -5 days to completely that alternate universe. Today, I regularly sleep 12 to 18 hours; and with night time insomnia. If I start feeling "funky" in my thoughts, I rest or sleep.
But like Hector suggested, try the cirrhosis community.
I think it's great to be concerned with your ex-husband's health. At one time he was your key to everything. Things change - yes. But your and his page remains indelibly in history.
Good life to ya,
No one knows how long someone with End Stage Liver Disease will live. It sounds as though some of his other organs are stressed, due to his liver not working. I agree with Hector and others who have said your ex-husband should be cared for in a hospital with a transplant center and a hepatologist. I'm glad to read that there's been a hospice consult. Perhaps you could schedule a meeting for your adult children and yourself to meet with the hospice provider and/or with the doctor to ask these questions. Perhaps there is a counselor at the hospital who can help you and your children find out answers to questions. Does someone have a Durable Power of Attorney for him? Does he have a living will and, if so, does someone have a copy? I think it's important to have some of these documents in place so that as you learn more information there is someone who can make difficult decisions if needed.
Best wishes to you and your family. Keep us posted as to how your ex husband is doing.