Hepatic Encephalopathy

[nettl1]

Has anyone heard of hepatic encephalopathy? I’ve made drastic, but necessary, changes in my life and my son and his wife think I’ve lost my mind. She’s a nurse practitioner at a big hospital and talks to all kinds of professionals. She says this mental disease is caused by liver cirrhosis. But I’ve had doctors visits regularly and they’ve said nothing about this disorder. Would be nice to hear from others with liver problems.

[southernsalt]

Yes, my husband was in the hospital for 2 weeks because it can cause mania like symptoms, confusion ,memory loss. It can be caused by the liver not getting rid of ammonia I would ask to have a ammonia blood test. Never heard anything about this before this happened to him this past year.

[nettl1 in reply to southernsalt]

I also was in hospital for 10 days in 2016 with septic double pneumonia, Hep c and liver damage When I woke I had those symptoms (didn’t know my name, birth date etc.). But that went away after four days. Now I feel great again. Finally getting my life back. But they don’t understand so they’re thinking I have a mental problem. Thanks for your response!

[bazizi-Islam]

Hi Nettl,

I wish you well in your time off difficulty. I've read a fair bit on it and from what I understand one must be careful with how much protein one is consuming. Furthermore some of the readings said that plant protein is better for those with hepatic encephalopathy. Have a hearty one on one with a doctor if possible.

[nettl1 in reply to bazizi-Islam]

Hi, thank you. The doctor has put me on a 2% sodium free and 5% protein diet per day. I see both blood/cancer and digestive disease doctors. I’m very careful. Don’t drink alcohol and don’t use salt, still working on the protein.

[nash2 Partner]

Hi Nett

HE is a fairly common consequence of liver fibrosis/cirrhosis. As the liver sustains more and more damage it is unable to process all the toxins and the result is dirty blood. Among the worst problems is ammonia which literally steals your mind. Here's brief story

fattyliverfoundation.org/na...

fattyliverfoundation.org/en...

We believe a lot of suspect early dementia are actually liver patients with HE.

fattyliverfoundation.org/br...

A liver friendly diet is usually about all that is available to manage the problem

Not much help, but be assured you are not alone.

Wayne

[nettl1 in reply to nash2]

Thank you! I’v been on a alcohol free, low sodium and protein diet for a long time. I do not want or currently have symptoms of HE.

[Lorrie420]

Yes I to have liver cirrohsis and my doctors are concerned with me getting HE. They monitor my toxin levels and have been running pretty high. They put me on Xifaxan tablets twice a day. It supposed to help when and if I get HE. It is very expensive though $873.00 but somehow I qualified for help through my doctor. I haven't been on it long but I just hope it works. Hope this helps

[nettl1 in reply to Lorrie420]

My doctors have never discussed HE with me. But my next visit I will be talking to him about it. Stay well!

[lovehorses6]

Hepatic Encephalopathy is a co-worker with a cirrhosis liver. With cirrhosis, the liver doesn't do it's job well and ammonia builds up, causing symptoms of confusion, inability to focus, loss of memory, imbalance. If your doctor says you have HE, you do. Well intentioned as your family may be, even using great connections in the medical field, you're in an area of health issues that is highly specialized. I'd follow doctor's protocol unless you think your liver specialist is not meeting your needs or is lacking knowledge. Good luck.

[nettl1 in reply to lovehorses6]

I love my liver specialist. He is very knowledgeable and informs me of everything that could happen. Thank you!

[RavensongNH2018]

Absolutely comes from your liver!! I have experienced it three times in the past few years. It's like having Alzheimer's and seriously effects your cognitive skills. Mine is caused when my liver is inflamed and the toxins in the blood aren't getting filtered. They will always draw an ammonia level because it's an indicator of what's going on.

[imsherbr]

As many others have reported, I too was hospitalized in 2015 with HE, closely followed by pneumonia and pleural effusion. Woke one morning and suddenly couldn't remember where my office of 10+ years was, and my next memory was my sister at my hospital bed telling me if been hospitalized and "out of it" for 3 weeks.

My Hepatologist stresses the use of Lactulose for encephalopathy, along with Xifaxin which I cannot afford ($3,450 per month until my annual copay is met).

[nettl1]

Thank you. I haven’t had memory problems since out of the hospital. See doctor on Friday and hope to have a good report.

[Sunshine1990]

My mother unfortunately suffered from this for years before sadly passing last October. She forgot names, numbers, dialed numbers on the tv remote to call me... It was scary. Talk to you Doctors, there arr medications that can help you. Lactalose is what my mom was on. I hope this doesn't scare you... I'm just telling you what I know. I'm praying for you.