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Hi everyone,


We are now dealing with HE due to Cirrhosis . What a rollercoaster ride this is becoming. Does anyone have any advice on dealing with this? We have been directed to begin lactulose at least 3 x's a day. So seems to me the liver just got worse. Along with all the other things I watch on my mother, now I'm watching for neuro issues so she doesn't go into a coma.


Any advise or wisdom is appreciated.

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Update for this week. The lactulose is helping. She still sleeps more than normal, but she's not so out of it like she was when we went to cardio last week. Echo was done, waiting on results. We still have 4 weeks before we see the liver doctor again. In the meantime we are doing an ultrasound of the liver in 2 weeks and meeting with oncology for her anemia.
She's already telling me she's tired of the meds and doctors.
I really appreciate everyone's insight. Information is comforting to me. and anything that helps my mother its great.
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AlvaDeer Mar 18, 2024
Thank you for this update, c.
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What do you mean, she will not qualify for Hospice? I again am not a Nurse but in my experience all the signs say this person is dying. No doctor is going to be able to change that. Hospice works on a 6 months rule but people have been on it longer. Your Mom has diabetes and heart problems too. Since she is retaining water like she is, I would say CHF and kidney problems caused by diabetes. She may not last the month.
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cdavis76 Mar 18, 2024
thank you. heart doctor said her heart is not causing the water issues. But he confirmed HE symptoms at this last visit, so we are using the lactulose to keep them from getting bad.
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I am not clear here as to what is happening. It honestly doesn't matter at this point what the age is of the patient; this is sounding like end of life care. Is it? Is Hospice on board?
The lactulose will cause massive diarrhea. I am certain you are warned of that.
This sounds to me, as a retired RN as impossible care to be doing in-home.
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Oedgar23 Mar 15, 2024
I would definitely look at hospice. My father had liver failure and was put on lactulose, and it caused several diarrhea BMs per day. Luckily he managed going to the restroom himself. When the liver has problems, there is a buildup of ammonia in the body that causes confusion, altered consciousness. If the patient takes lactulose, the ammonia binds with us and is eliminated via the BMs.
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"Hepatic Encephalopathy is the loss of brain function when a damaged liver doesn't remove toxins from the blood." The lactulose is for her BMs.

I am not a Nurse but I do understand what toxins do to the body. The only thing that may save Mom is a liver transplant. Is your Moms stomach enlarged? If so, she maybe in her final stage of her disease. Not sure what a doctor can do for her at this point. You may want to consider Hospice.

So sorry.
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cdavis76 Mar 15, 2024
unfortunately it’s not looking like she is going to qualify. Her lung capacity is very diminished . Her heart is enlarged. And she’s extremely frail. We just moved her mid February here. So I wholeheartedly expect hospice need by the time we go back to the liver doctor next month.
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We see the liver doctor again next month after an ultrasound and in the background we have seen all the other doctors. Since he doesn't know her like her prior doctors they always want to do their own tests.
Yea, she's young. But she looks 80, she seems to be declining to me, I wouldn't be surprised if we don't get put on hospice next month. If not, I will ask about LTC, that's a great idea. My husband is great moral support but this is still taking a toll.
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Anxietynacy Mar 15, 2024
I'm sure it is taking it's toll on you, I've seen people pass from liver deasses, it so not easy. But it really sounds like your on top of things. And doing the best you can do. Good luck and keep us posted
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Your profile says your Mom is only 67 and "We just made the decision to take my mother out of her home due to her decline with cirrhosis and losing our current caregiver and the costs involved in her increased care." So she is living with you now.

You may want to talk to her doctor to see if she qualifies for LTC. This is because every state's Medicaid covers LTC, as long she qualifies both medically and financially.

Or, is she a candidate for hospice?

I'm so sorry you're dealing with this.
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