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twocatmama (@twocatmama)

End stage liver disease

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

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@mandosssss

Hi,
Thank you so much for responding …Yes my brother is on a strict diet low sodium, no beef and since he is diabetic low sugar everything. He has had an issue with his ammonia levels for the last 3 weeks, 1st week 200 ammonia level then 314, then last week 336. Every single time he ends up in critical care. In a state like coma for at least 2 days. So very scary and painful to see.

He is on a lactulose and antibiotics and now on L-Ornithine-L-Aspartate , it is supposed to work hand N hand with the lactulose. Getting these ammonia levels in order is so hard. You all give me hope that he will one day have a better quality of life.

We have had issues with getting a doctor and specialist that can work together with us. I read about liver teams. Is this something that hospitals have? or is it just a way of classifying your own team.

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Replies to "Hi, Thank you so much for responding ...Yes my brother is on a strict diet low..."

@mandosssss Is your brother seeing a hepatologist yet? If not that should be the next step I think.

Even though he does not yet qualify for a transplant he could be seen at a hospital that does transplants, they know the most about all of this. That's where the term "liver team" comes from. You have a team of doctors who coordinate together. It generally involves a hepatologist, a transplant surgeon, and possibly other specialists if he has other existing problems that need to be addressed prior to being a transplant candidate. I would imagine in his case there might be someone who could be helpful to him in his battle to stay away from alcohol. Prior to transplant, after I went through all of the tests to qualify, I only saw my hepatologist.

Has any mention been made of xifaxan? For me, and from what I have heard from others, that seems to be the most effective remedy for HE. It is very expensive but depending on his insurance the cost might be doable. I was on Medicare and still had to pay about $700 a month for it until I hit the "donut hole" and the cost went way down. With a drug that costly it doesn't take long to get to the donut hole. I have no idea how private insurance handles the cost.
JK

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