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Axamillion

569d

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!

Top reply
    • Axamillion

      487d

      @MarineMom 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!

    • MarineMom

      490d

      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

      • Axamillion

        487d

        @MarineMom 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!

    • MarineMom

      568d

      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.

      • Axamillion

        524d

        @MarineMom have you gotten any updates on your liver decomp?

      • Axamillion

        524d

        @MarineMom 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.

    • JaxxVerax

      569d

      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.

      • Axamillion

        547d

        @JaxxVerax I take xifaxin twice daily.

      • MarineMom

        568d

        @JaxxVerax 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.

    • MarineMom

      569d

      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.

      • JaxxVerax

        569d

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

        • Axamillion

          547d

          @JaxxVerax I had HE. Woke up in the hospital to be told my hubby and mom had taken care of me at home for 2 weeks and in hospital for 1. I was compared to a stroke victim. This was in march. ‘22.

        • MarineMom

          568d

          @JaxxVerax confusion (got lost getting home from a known location and my husband had to pick me up), memory loss (can't remember my address), leaning against a wall when walking....

      • Axamillion

        569d

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

        • Axamillion

          547d

          @Axamillion Sorry I’ve not been on here. My ammonia level recently was47. Lowest for me so far. Just had CT yesterday. Possible blocked bile duct. Have elevated bile salts. Not ready for the phone call. 🙏

        • MarineMom

          568d

          @Axamillion my ammonia level is usually just below 40 now, which is mildly high but my doctor's aren't concerned. They say that they go more by symptoms when it's only a little high. I was in the 80s when diagnosed. Yes, I have regular cancer screenings every six months which have all been negative thank God. I go again next month. How about you?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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