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.
Thank you all for your help. He was discharged Sunday and sent home with Hospice care. The doctors estimated that he has a few days to a few weeks left. His ammonia level at discharge was 240, but it won't be checked anymore. His WBC, RBC and hemaglobin are extremely low because he is bleeding internally. None of the treatments helped during his hospital stay.
Our kids are 25 and 21, and they are struggling with the news. Their dad was a longtime alcoholic who finally quit in August of last year. He was working hard to get on the transplant list. He had to successfully complete outpatient alcohol rehab classes in order to be placed on that list. He had less than 4 weeks of classes left. He simply ran out of time.
As of today, he is awake and alert. The confusion is gone right now. The doctor said he could lapse into a coma at any time. The kids are spending all the time they can with him, and they are grateful for each day. Please keep our family in your prayers. Thank you.
Tink it's very sad and I'm sorry for your family. I'm glad your kids have a chance to spend time with their dad while his mind is clear. As always you all are in my thoughts and prayers. God Bless.
I am so sorry for what you all are going through. I read your other post and I will share it with others outside of MH as well.
You, Mark and your children are in my prayers. May you all find comfort and peace.
My mothee does not drink but has cirrhosis from. NASH and has had the Ammonia issues. We are using zifaxan (which is outrageously expensive) and lactulose orally twice a day. But the only way we can keep her levels down is by giving her two lactulose enemas a day.
My dad also is having Ammonia issues with NASH, did you mom have a TIPS?
This as you have likely been told is progressive. The ammonia levels are usually partially controlled with lactulose which is a liquid laxative that helps to asorbs ammonia in the GI system and aids with keeping the bowel cleaned out. It is generally given three times per day and dose is adjusted according to individual response. The lack of energy and decreased awake times can be attributed to several factors. One hemoglobin is very low this carries oxygen to all the organs. Decreases on red blood cells will also mean a decrease I iron and effect energy levels. Another factor could be pain medications. Some people become quite sedated with pain meds. I is difficult even for the doctor to give a definitive time line for anticipated progression of this disease. Each person is different. I hope this was helpful and remember comfort is the most import part of treatment.
is your ex husband still alive?
My husband is in the hospital right now for his ammonia levels being high it was 220, he wentbin october 6 and got out october13 and went back in on the 26 for his low blood pressure and low potassium , got out on the 30 and went back in on the 1 of november for his ammonia level being to high it was 141, now it is 40, but he is still alittle confused, he is still in there today, he has to be on lactulose, for the rest of his life , this is his 3rd time in , we celebrated our 17 years married on the 2nd of nov, the 27 of november will be 30 years together....
So sorry to hear about your husband. This is an old thread. You may
want to start a new thread by clicking on the post a question green tab.
You also may want to share some more details of his illness. You will certainly get some advice and support here.
I thought my thinking had totally left me! I was so confused until I saw Lynn's link and your post. Good lord, when one is worried about Lactulose, meds and thinking clearly, this post/thread was a total trip!
Next time I'll look closer at the dates!
Thanks Lynn and Nan!
My friend has high amonia levels and cirostis of the liver and he put it is c she is so clumsy and makes no sense when talking but she is on lactose 3 times a day.
the dementia part of this is so hard..one second she fine (mother-in-law) the very next shes talking about worms under the floor
Hello can you please helpe understand how your husband woke up and not confused my husband is still sleeping and would like to have help ple as e don't know what to do
Dear tinker 35 , i have just entered where you started his levels are on a quick rise despite all medications . I appreciate your such personal battle i too have adult children as well and they too are sad and angry , unlike your husband mine didn't stop this time. My heart and prayers are for you and him as well as your children . This is the most difficult thing , you know not being able to make things better , that is what Moms and wives do ....and of course so so much more . but here we are anyway .. thank again , your honesty has soothed me..