1. < Transplants

I have questions about Hepatic Encephalopathy

Posted by sharonagnes @sharonagnes, Sep 17, 2021

My husband has been diagnosed with stage 4 liver disease. We are waiting for an appointment to see if he can be put on the transplant list. Prior to his diagnosis and even after a hospitalization, he has signs of HE. Hallucinations, personality changes, irritability and impulsive behavior. He no longer has hallucinations but he still has the others on some level despite being on lactulose. Question about HE - Is there any other ways to treat this besides lactulose? After transplant (if he is eligible and if we get one) will these symptoms and changes go away? Is therapy helpful for HE? As a caregiver how do I handle the anger, moods, impulsivity?

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sharonagnes | @sharonagnes | Sep 22, 2021
In reply to @rosemarya "@sharonagnes, This is good news! I am happy that he is going to be referred to..." + (show)
@rosemarya

@sharonagnes, This is good news! I am happy that he is going to be referred to a transplant center. You will be amazed at the extensive amount of knowledge and information that will be available to you, as well as expert care for your husband.
I commend you and him for the success of his alcohol recovery. This will be something that is necessary before transplant listing.
I also hope that he gets an appointment soon and the the adjusted Lactulose dosages will lead to an improvement in the HE episodes.

My regional transplant center was only 45 minutes from our home. Is there a transplant center nearby? Do you know where he will be referred?

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We are within 45 minutes of Mayo Clinic in Rochester, MN so that is a lucky break for us.
We are looking at having him enter a 30-day in-patient program soon as we know he has to have it completed before being put on a list.

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1 reply
athenalee | @athenalee | Sep 22, 2021
In reply to @sharonagnes "The doctor we saw on Monday is recommending us to the transplant program. We hope to..." + (show)
@sharonagnes

The doctor we saw on Monday is recommending us to the transplant program. We hope to get an appointment in a few weeks.
He does remember the episodes but not the severity of them. His doctor said it was atypical of HE and he didn't have any suggestions. He will be going to a 30 alcohol treatment program (He has not drank for over 9 months and is doing well with that) and maybe therapy might help him control the episodes, but my observation is he seems to have no control over them.
My husband takes 1 dose of Lactulose daily and has 4-6 bowel movements a day. We may try 2 doses and see if there is an improvement.

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Congratulations on your husband’s referral. It will be a bumpy road, but it’s good he has your support. The lactulose can be tricky to manage…most of us with late stage cirrhosis had to learn how best and how much to take. So, your husband will have some trial and error as he learns how his body does best. Ultimately it is key to helping him while he waits for his transplant.

Be sure to encourage him to walk and eat well so that he is as healthy as possible for his surgery. His transplant team will be a valuable resource for you and him.

Those of us on Connect are happy to help answer questions you both might have, of course, from our own journey and experience as liver disease patients and transplant recipients. I wish I had found Connect before my transplant…I had so many questions! I research everything, but reading medical journals doesn’t tell you about what we face as patients and caregivers.

My best to you both!

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athenalee | @athenalee | Sep 22, 2021
In reply to @contentandwell "Thanks, @athenalee Those are both good articles. I am terrible with medical jargon so I found..." + (show)
@contentandwell

Thanks, @athenalee
Those are both good articles. I am terrible with medical jargon so I found the first to be a bit more understandable. It’s saying what MGH has said, that antibody tests do not tell the whole story. True, but in my mind it’s better to know something than to know nothing.

It says older people have a lesser response but there are many variables not considered like the health of the older person, etc. I am not in as good shape as I was before the pandemic but I do have a good lung and heart function per my Apple Watch, better than typical. That has to count for something even if not just in how sick you get if you catch Covid.

I came across some masks online today that are 5 layer kn95. I ordered some. I’m hoping they give the maximum protection available.

I was on the portal for my PCP today and they seemed to rate my prior test results in the middle of a range. I hope I get to get the test again. I don’t see why the doctor wouldn’t order it, it only takes a few minutes for someone in her office to write it up.
JK

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That’s kind of odd and certainly not informative! Remember, the jury is still out on what exactly it means to have have higher antibodies anyway. Being vaccinated, safe, and well protected with a good mask are the most important things.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 5, 2021
In reply to @sharonagnes "We are within 45 minutes of Mayo Clinic in Rochester, MN so that is a lucky..." + (show)
@sharonagnes

We are within 45 minutes of Mayo Clinic in Rochester, MN so that is a lucky break for us.
We are looking at having him enter a 30-day in-patient program soon as we know he has to have it completed before being put on a list.

Jump to this post

@sharonagnes, I am thinking about you as you and your husband begin your journey into the future. I hope that you are soon to be busy with more appointments that will result in your husband being listed for a transplant.

How are you holding up with your new caregiver role? What questions about the liver transplant evaluation process would you like to ask?

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