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Axamillion

Updated 10mo ago

Dealing with Hepatic Encephalopathy Diagnosis

Anyone have experience with hepatic encephalopathy? I’m 53 and was just diagnosed in march after what I believe to be a long period of misdiagnosis. Worried for my Children’s futures? Hoping to be with them and my grandkids!

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MarineMom

2y

Yes, I had HE at the time of my liver disease diagnosis in Oct 2020. It was quite scary. Since that time I've been following all of my doctor's recommendations, including a very low sodium diet and absolutely no alcohol. My ammonia levels came down rather quickly, but my HE symptoms lasted much longer.
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Axamillion

2y

have you had tests for cancer? My last ammonia level was at 54. Have you gotten yours into the normal range?
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JaxxVerax

2y

when you say “ my HE symptoms” and nit ammonia what are you describing? Curious. Thx
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JaxxVerax

2y

Lactulose controls mine. There are other meds too. Xiafaxin?(sp) mine stays in a range And out of that range Is alarm. Sorry I don’t have current tests . My last were alarming and adjustments made. I wouldn’t also ask Drs about MELD score , which assigns a severity level and guides for ongoing care.
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MarineMom

2y

I take both of those meds as well, and a few others. Excellent suggestion regarding MELD. Mine is tracked at every visit and has decreased significantly.
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Axamillion

2y

I take xifaxin twice daily.
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MarineMom

2y

Has anyone had liver decompensation after stabilizing? I currently have compensated liver disease after healing from acute liver and kidney failure but my doctor's have told me it's possible to decompensate if I started drinking again, didn't take meds, didn't follow diet, or for no reason at all. I'm wondering if this has happened to either of you? I'm scared of it happening to me.
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Axamillion

2y

haven’t heard of the decompoosition. Have been told after ct that I’m early liver cirrhosis. No cancer though. Thankful for that. But like you I will get checked every 6 months. How are you doing mentally? I’m really struggling with that right now. Just can’t find joy.
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Axamillion

2y

have you gotten any updates on your liver decomp?
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MarineMom

2y

sorry I haven't responded sooner! I still have compensated liver disease but I'm worried about it decomp-ing and what would cause it. I had a MELD of 17 at time of diagnosis in 2020. My MELD is now 6. Like you, I've struggled emotionally as well. I am not working or driving so the loss of my profession and freedom has taken a toll. I have an appointment Monday for neuropsych testing (finally!) How are your bile ducts? Are they still blocked? I've had no experience with that
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Axamillion

2y

bile ducts seem to be better or at least I’m not itching like I was. I’m not driving or working either and it’s really getting boring. Seems like every day is the same long endless thing with all this time to just worry about what’s going on and what the future holds. I’m sure you can relate. Hope your appointment yesterday went like you wanted it to. I’m here to listen if you need an ear!

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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