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twocatmama (@twocatmama)

End stage liver disease

Digestive Health | Last Active: Aug 14 3:10pm | Replies (10)

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@rosemarya

@mandosssss, I would like to welcome you to Mayo Connect. I think that your brother is a lucky guy to have you as a sister. Being diagnosed and enduring the difficulties of cirrhosis is an awful thing to experience, both as a patient and as a loved one. I was diagnosed with a liver disease that caused my cirrhosis and my eventual transplant in 2009.

Your brother is fortunate that he has a dedicated group of doctors who are working with him to get his ammonia levels under control. The condition that you describe is caused by a buildup of toxins in the brain (hepatic encephalopathy). A liver damaged by cirrhosis isn't able to clear toxins from the blood as well as a healthy liver can. These toxins can then build up in the brain and cause mental confusion and difficulty concentrating. The lactulose is the medication that is used to control this buildup. However, it does come with bothersome side effects as you are witnessing.

I want to invite you to join a discussion in the Transplant Group where @contentandwell, @jodeej, @gaylea1, @amyintucson, @kltchrmn have shared their experiences with lactulose for hepatic encephalopathy.
-Lactulose question
https://connect.mayoclinic.org/discussion/lactalose-question/
Will your brother be evaluated for a liver transplant after the 6 month period?

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Replies to "@mandosssss, I would like to welcome you to Mayo Connect. I think that your brother is..."

@mandosssss @rosemarya
I too welcome you to Connect. As Rosemary commented, your brother is very fortunate to have you looking out for him.

I had HE episodes somewhat frequently until I went to a hepatologist and she prescribed xifaxan for me. When I started taking that I was able to drop lactulose for about 8 or 9 months and had no HE episodes. When they resumed I had to start taking lactulose with xifaxan, obviously my liver had deteriorated further.

Something I did not do myself but I think could be helpful is to track what your brother is eating, and when he has an HE episode see if there is a common food that could be leading to it. I think that perhaps beef was a problem for me. I was told it was OK to eat it in small quantities, which I did, but maybe I was just more sensitive to it than other people with cirrhosis.

My cirrhosis was from fatty liver, not alcohol, but once you have cirrhosis it doesn't matter what the cause was, it's all the same. I had a number of hospital stays, generally two or three days each time. I went to my local hospital which of course is not as knowledgeable about cirrhosis and HE so frankly the treatment there was not good, they just seemed to think I was a belligerent old lady. If you are close enough to the hospital where he will be getting a transplant I would advise you to have him brought there.

I really empathize with what you and your brother are going through. Having HE episodes was the worst part of cirrhosis for me and even now, almost 5 years after my transplant, thinking of those days brings tears to my eyes.

Please feel free to ask any questions you need to have answered, either here or by private message.
JK

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