How to deal with hepatic encephalopathy in a relative?

[LFAR7700]

Hello,

has anyone had any experience with a relative with chronic liver disease experiencing sporadic episodes of Hepatic Encephalopathy? My dad and I have been noticing some changes in personality and odd behaviors in my mom who has portal vein hypertension and cirrhosis of the liver. It's only been happening recently, and we are at a loss on what to do. Her ammonium levels are fine, but that is common for individuals with chronic liver disease apparently. Any advice would be helpful. Thank you!

[AyrshireK]

The usual treatment for Hepatic Encephalopathy is Lactulose in conjunction with Rifaximin. Ideally your mum should be doing the toilet 3-4 times daily to remove toxins from the body, if she isn't doing this then toxins build up and can cause HE symptoms. Some people find that removing red meat from the diet helps as red meat can lead to more toxins.

The British Liver Trust has an excellent page on HE including a patient passport to help monitor the condition. britishlivertrust.org.uk/in...

Katie

[LFAR7700 in reply to AyrshireK]

Thank you so much! I will ask her liver doctor about it!

[cammeag]

Hi. Is she aware of this? If bloods ok what is her diet like? Make sure she gets enough calories but not too much protein. Around 103 mg a day is ok. Use a decent diet tracker to keep an eye on this. Fat Secret is the one I use. Is she on diuretics? If so how much? I’ve had this intermittently. Know the signs. Normally twenty four hours and it’s over. It’s terrifying. You can’t even put on a pair of gloves. If your really worried my mail address is cammeag at (hot😊)mail and c.o.m. Not the other one.

Take care

David

[LFAR7700 in reply to cammeag]

Hello! She doesn't eat very much to begin with and is very skinny. She is also on diuretics-- I am not sure on the quantity but she takes 1 lasix a day. We need to be better about her diet for sure...she isn't aware of this or she is in denial. My dad and I tell her about her odd behavior but she denies it. It's very frustrating! I don't think she notices it...This has never happened before, so I wonder if it could be due to her diet or diuretics. Thanks for the insight! I will send an email if I have any other questions

[AyrshireK in reply to LFAR7700]

When someone has such advanced liver disease they need to fuel, I find that if my hubby goes too long without any carbohydrate it's like someone pulls out his plug - he fades rabidly and can have almost like a complete mental and physical shutdown. As soon as he sits and eats something it's like the power comes back on. This issue with your mum might be more to do with her lack of fuel rather than HE. If she isn't eating enough she will be fading away, her body will consume her muscles for fuel. When you are onto the GP you might want to ask about supplementary drinks which provide carbs and protein if she isn't managing to eat properly.

Katie

[cammeag in reply to LFAR7700]

Totally agree with some comments. Lactulose, absolutely. I got admitted with HE and they gave me an enema. It was the main cause ‘that’ time. Cut red meats out, or at least minimal amount. Fruits and veg clear toxins out if you can eat enough. The better she feels the more she will eat. Essential to stop liver destroying muscle groups. It would be better if your mum knew, or if she’s not accepting it from you, ask the doctor to do it but only if their knowledgeable in liver problems, some are amateurs I’ve met all types. Keep us updated

David

[upthereds]

Hi - I know exactly what is happening through personal experience. The lactulose is a must. Ask your doctor or consultant whether her bilirubin levels are OK. I had to remind myself that the HE is not the patients fault and is beyond their control. Has she had any falls?

Stay strong - and look after yourself. Careing for someone you love is difficult and very tiring.

[LFAR7700 in reply to upthereds]

She hasn't had any falls and she is still pretty active-- she exercises every day and she has a pretty good memory and most of the time she is "still with it". However, she does have moments where she appears absent and not really herself.. I have asked her liver doctor about lactulose, but her billirubin isn't too high--- I think it's betwen 3-4. Her MELD score isn't bad either, which is why this is so frustating.