LIVING WITH HEPATIC ENCEPHALOPATHY

[HectorSF]

Documentary with patient's and loved one's describing their experiences with HE.

https://www.youtube.com/watch?feature=player_embedded&v=MP-Q6fwhFWE#!


Hepatic encephalopathy (HE) is a brain disorder that is caused by liver damage. HE can be an acute (short-term) or chronic (long-term) condition and can be mild, moderate, or severe.

What are the symptoms of hepatic encephalopathy?
HE can cause mental and physical symptoms. They can vary person to person, and may progress slowly or occur suddenly.

Symptoms may include:

Mild confusion
Forgetfulness
Personality or mood changes
Poor concentration
Poor judgment
Stale or sweet odored breath
Change in sleep patterns
Worsening of handwriting or small hand movements

Severe symptoms may include:

Unusual movements or shaking of hands or arms (also known as “flapping”)
Extreme anxiety
Seizures
Severe confusion
Sleepiness or fatigue
Severe personality changes
Jumbled and slurred speech
Slow movement

What are the complications of hepatic encephalopathy?
Complications of HE may include:

Brain swelling
Permanent nervous system damage
Increased risk of heart failure, kidney failure, respiratory failure and sepsis (blood poisoning)
Coma

[Dee1956]

Hey there, I have been away and just read this
Thank you for the information.
I have noticed that the HE I experienced is much improved and I am on less lactulose than before
Thank you
Dee

[crossroadsec]

I know there were days when I was on tx that it was HE I was dealing with. Blood labs showed high ammonia after bleedout too. I've chatted with you when we were both a little HE. haha! It can be a funny conversation...
Take care YOU,
Karen :)

[rexx73]

thanks alot for this very detailed infos about HE.
i talked today with a hepatologist at the transplant center where i go for my hcc screenings,and he also said that my symptoms do not sound like having HE.

marc

[countrygirlcansurvive]

Hi Hector!
    I just went to a physcologist yesterday via SS for a mental exam.I never knew about HE.I have noticed on here that I have the Early symptoms and need to address this to my doctor. My family has noticed this for a few years now they say.I am glad you brought this to my attention,maybe this explains my Confusion and Forgetfulness and Irritation.Like I said I have had them for quite sometime,I know the treatments causes some of those but I had them long before that.

    So are you saying that you have to have ESLD to have HE?
     Is there a Early Stage of HE?
    Can it come on slowly over the years of having HepC and Cirrhosis?

Very Curious!
~Country

[Idyllic]

The video was very informative to say the least.. One misconception I had about HE was that I thought since HE tends to be caused or associated with disorders that affect the liver (or reduce liver function like cirrhosis & Hepatitis) that HE could be minimised/managed or maybe even subside if the underlying liver disorder were treated. But I suppose that falls under the realm of prevention (??)

I know the video was to focus on the lifestyle but it seemed like a few were in need of a transplant and more 'comprehensive support' then they apparently had in the video. It was a sad rude awakening. But as the intro stated the video is to raise awareness.

[HectorSF]

"i have to add that my last biobsy was in 2008 and showed f3.(hep-c)
i did the triple tx with incevik and just finished last friday."
Only patients with advanced cirrhosis experience HE. Not bridging fibrosis or early cirrhosis. It is not uncommon for people have anxiety because of having hepatitis C and relatively advanced liver disease. And treatment side effects can cause anxiety as a side effect.

HE usually causes the opposite of anxiety, just watch the video, people have - dullness, lethargy, foggy thinking, everything is slowed down, when it is more advance you may appear drunk unable to walk properly because of coordination problems. Slurred speech is common. In its most advance stage it will cause life-threatening coma. Anxiety if not a sign of HE.

There are many causes of forgetfulness. HE causes people to forget where they are when in a familiar place? Why they are there?

Your symptoms don't sound anything like HE.

"Lab results if HE is present?"
Levels consistent with cirrhosis. Low platelet count <75,000. High bilirubin. Increased INR, etc. Scan show nodules of the liver and portal hypertension, enlarged spleen etc.
High ammonia levels are common with HE. Although there are both false negatives and false positives. It is the blood level most associated with HE.

Good luck with your treatment!!! HE is not relevant if you are cured as and have compensated cirrhosis. It would reverse. If you achieve SVR your liver will be able to partially reverse the damage that has been done and you can lead a normal life.

Keep up updated on your post tx lab tests.
Cheers!
Hector

[rexx73]

i expirience since 1.5 year extreme anxiety, restlessness,and i feel very nervous all the time and i wonder if HE could be the reason for that?

i also noticed that iam more Forgetfulness than before.concentration is also more worse than before.
other symptoms as listed above are not present.
would one see in lab results if HE is present?

i have to add that my last biobsy was in 2008 and showed f3.(hep-c)
i did the triple tx with incevik and just finished last friday.

i apreciate some opinions

[HectorSF]

My pleasure. I hope people can get some insight into how devastating HE can be when it gets to its more advanced stages from a patient and their caregivers point of view. This was a good reminder to me about how I need to constantly monitor my mental state and be compliant with my Lactulose dosage to best manage my HE. One of the problems with HE is when we are experiencing it, we are unaware ourselves of how much it is impacting or mental and emotional lives.

Thanks Randy!

Hector

[rpooo]

Hector thank you so much for all of your strong and generous contributions to our community!

Randy