NASH is undoubtedly a complex disease, with a wide spectrum of progression and diagnosis. The good news is that if you intervene early you can stop and even reverse the serious liver damage that NASH causes. The bad news is that if it goes undetected it can cause sudden liver failure and death.
Such was the case with my Mom. Here is an excerpt of my recent presentation for International NASH Day.
A day later I received a frantic call in the early hours of the morning from my Dad. Something was wrong with Mom. Luckily I was only a few blocks away and raced over to find her in a dazed and confused state, aimlessly walking in circles and incoherent, a condition I later learned was due to her liver failing and not being able to cleanse dangerous toxins from her blood. She was rushed to a local hospital, where the initial diagnosis was not good. The liver biopsy returned later that night and confirmed the initial suspicions…Mom had late stage NASH that had progressed to severe Cirrhosis. She needed a liver transplant to live.
My Mom had barely any symptoms in the weeks before this incident. She had a battery of liver tests done just days earlier and still Doctors were unable to predict that her liver would spectacularly fail just 24 hours after she was discharged. She would pass away barely 6 weeks later.
This condition is known as stage 3 hepatic encephalopathy. You might wonder how a patient could progress this far without any warning, but it is actually quite common, because the symptoms of earlier stages are mild or easily confused with normal behaviors. The American Liver Foundation lists the stages (referred to as Grades here) as:
- Grade 0: Minimal HE
This stage is very hard to detect as changes in your memory, concentration and intellectual functioning are so minimal that they may not be outwardly noticeable, even to you.
- Grade 1: Mild HE
You may have a short attention span, notice mood changes like depression or irritability, and have sleep problems.
- Grade 2: Moderate HE
You may keep forgetting things, have no energy and exhibit inappropriate behavior. Your speech may be slurred and you can have trouble doing mental tasks such as basic math. Your hands might shake and you can have difficulty writing.
- Grade 3: Severe HE
You may be confused as to where you are or what day it is and be extremely sleepy, but can still be woken up. You may be unable to do basic mental tasks, feel extremely anxious and act strangely.
- Grade 4: Coma
The last stage of HE is when the person becomes unconscious and slips into a coma.
As you can see, the first three stages can be easily mistaken for any number of benign causes, especially in older patients. In retrospect, we recognized many of these symptoms, which we generally associated with just Mom being Mom at the time. The slow and methodical progression of NASH over years had conditioned us to accept things like forgetfulness and her late nights as merely normal effects of aging. Just one of the many ways NASH is particularly insidious in its progression.
What is really happening throughout these stages is that liver damage is accumulating that prevents the organ from fulfilling one of its primary roles; to detoxify the bloodstream. The liver is an amazing organ with dozens of functions, and detoxification is a major one. And we are not just talking about toxins that you voluntarily ingest such as alcohol and drugs. As a natural part of digestion, various leftover toxins such as ammonia are produced when your body metabolizes and breaks down proteins.
When Mom was admitted to the hospital, her ammonia levels were sky-high. She was right on the cusp of slipping into a coma, and the doctors actually medically-induced one to better treat her. They were eventually able to use drugs to lower these levels over the course of 72 hours to where she finally regained consciousness and was able to return to a normal cognitive level (but that was probably still in Stage 1 or 2).
Hepatic encephalopathy if left untreated will lead to coma and death. My Mom was fortunate enough to have my Dad around to quickly find her and call for help. For many older people that live alone and may be suffering from NASH (or other liver diseases) that cause hepatic encephalopathy, there may be no one to find them until it is too late. My mom lost her battle with NASH but at least she had a chance to fight it, however briefly. This is just yet another reason why it is so important to focus on early diagnosis of NAFLD and NASH.
I try not to be a fear monger, but to me it is incredibly scary that you could be living with NASH, completely unaware of its progression, until you suddenly lose your mind and spend potentially days in a state of highly decreased brain function before falling into a coma and dying. All simply because you had a buildup of fat in your liver that became deadly.
My mom was celebrating her 62nd birthday and enjoying her kids and grandchildren at the shore just days before she slipped into this state and was diagnosed with NASH. If you or a loved one are at risk for NASH you should talk to your doctor as soon as possible.
13 thoughts on “Dazed and Confused – when severe NASH leads to Hepatic Encephalopathy”
It’s very frustrating disorder is HE, while treating it always disturbing doctor & patient .
But a good explanation from you !
I had the same experience as your mom. My wife returned home to find me disoriented and not even recognizing her. First day, I didn’t know what year it was, the names of my kids or grandkids or pretty much anything. Three days later I regained my senses but the brain fog I had never left.
Very interesting and helpful article. Thank you
Dear David, I am a researcher from Germany working on Hepatic Encephalopathy hoping to be able to help cases like your Mom in the future. For my work I would like to use the scheme you use in this article, the 2nd one comparing states of “healthy liver” and “liver failure”. I would highly appreciate if you could tell me the source of this picture or, in the case you made it yourself, grant me your permission to use it in my thesis.
Thank you and best regards, Leonie
Hi I believe that the original source is front this study published in Gastro Journal https://www.gastrojournal.org/article/S0016-5085(09)00561-7/abstract#/article/S0016-5085(09)00561-7/abstract
Please feel free to use anything from this site and keep me up to date on your research…I’ll be happy to link to it once it is completed. If you have any other suggestions for me to cover let me know.
Thanks a lot, David!
We have a friend with this illness..
Please can you advice us on the intake of fluids as we got diffirent opinions from different drs.
One said he must’nt drink more than 1.7l a day, imcluding fruit and soup.
The other dr said a lot of fluids.
He is on medications, thirsty al the time. After a few days his complex turns yellowish and he gets confused. Can this be not enough fluids?
If I want to know whether it’s my case or not what should I get tested?
If you believe you have these types of symptoms you should talk to your doctor. They can recommend a Hepatologist for further review.