- Hepatic encephalopathy (HE), a condition that causes temporary worsening of brain function in advanced liver disease, is on the rise in young women.
- This occurs when the liver can no longer clear toxins from the blood, resulting in those toxins affecting the brain.
- Medication as well as lifestyle modifications, such as diet and exercise, can help with HE.
In 2015, Landree Sarata found herself driving through McDonald’s to buy food for her imaginary car companions. She then drove her “friends” 3 hours to the Detroit airport.
While it may seem like Sarata was developing a mental disorder, it was actually her failing liver causing neurological symptoms.
“Most people don’t associate brain function with liver function,” Dr. Howard Franklin, vice president of medical affairs at Salix Pharmaceuticals, told Healthline. “The normal function of the liver is to filter the blood and take toxins that get into the bloodstream via the intestinal track and clear them.”
When there is compromised liver function, Franklin says the liver can no longer clear toxins from the blood, and the toxins that get into the blood stream are noxious to the brain.
Turns out, this is what Sarata was experiencing. However, she didn’t learn of her condition until she underwent surgery.
“I went to get my gallbladder out, but they couldn’t do the surgery because my liver was so bad,” she told Healthline.
After undergoing several tests, Sarata who was 31 years old at the time, was diagnosed with cirrhosis and hepatic encephalopathy (HE), a condition that causes temporary worsening of brain function in advanced liver disease.
While her cirrhosis was caused by alcohol consumption, Sarata says she was a social drinker.
“My body just couldn’t handle what I was putting in it. I was somebody who got shingles all the time, hives because my immune system was [weak], hypothyroidism, Hashimoto’s… so when I put alcohol in my body, not even an excessive amount, it reacted in such a negative way that all the sudden almost overnight I got so sick,” said Sarata.
Her condition was unusual to her doctors too.
“It was surprising Landree got this because she’s a young, vibrant woman. Most people historically would associate this type of pathology with the elderly, but that’s not true and it’s changing,” said Franklin.
He says in the past 4 or 5 years, there has been a 27 percent increase in the number of young women who have HE.
Dr. Jasmohan Bajaj, professor at Virginia Commonwealth University, says HE is an epidemic in cirrhosis and is a disease that affects the entire family.
“It cuts through all social strata and taxes the physical, financial, and emotional health of the patient and their caregivers,” Bajaj told Healthline. “Underlying the development of HE is the development of cirrhosis, which is often caused by alcohol use disorder and obesity. These two problems are increasing in the U.S., especially among younger individuals, and are a major challenge we all need to work on.”
Leading up to her diagnosis, Sarata felt lethargic, bloated, began gaining weight, and became forgetful, all which worsened over a 3-year span after her diagnosis.
Bajaj says HE can cause a spectrum of brain function changes ranging from subclinical feeling of “slowing” all the way to coma.
“All these stages have their unique challenges. Covert HE can often be felt by patients by the feeling of slowing down in general and specifically during work and driving and changes in sleeping pattern. Overt episodes often present with confusion, not knowing where one is or is doing and personality changes,” Bajaj told Healthline.
Sarata’s symptoms affected her to the point where she could no longer work at her job as a medical sales representative.
“I couldn’t be responsible enough to get to where I was going. I had to drive a lot, but I would get lost all the time. I had many instances where I was supposed to be in a doctor’s office in one city and went to another city instead,” she said.
Her social life and relationships were also impacted.
The most heartbreaking incident she recalls is kicking her mother out of her house because she believed she was an intruder pretending to be her mom.
“When you have a disease like this, you can have hallucinations and can’t remember who people are. My mom didn’t know what was happening and I didn’t either. It was the lowest low. I was ashamed because you don’t black out with HE attacks, so you relive every moment of what you did, and that’s tormenting because you’re so out of character,” said Sarata.
Fear of interacting caused her to have social anxiety.
“I was paranoid about what would happen. I felt isolated and alone because I was dealing with a decomposing liver and gallstones and gastroparesis and then I was stuck in a mental prison too because I couldn’t tell or explain to anybody how I was feeling,” Sarata said.
After diagnosis, she ended up in the emergency room monthly, and at one point, she was in a coma for 13 days due to uncontrolled HE.
“My ex-husband found me on the ground foaming at the mouth,” she said.
However, it wasn’t until she suffered internal bleeding that she was finally given a medication that controlled her HE.
“I was being discharged [from the hospital and] a case manager came in. She asked to go through my drug list and she found a missing medication that ended up changing my life,” said Sarata.
Bajaj says treatment depends on the stage of HE.
Stage 1 is the subclinical or covert HE, in which the goal is to improve daily function. Stage 2 are acute episodes of overt HE, where the goal is to get back to being alert and discharged from the hospital. The last stage is aimed at preventing recurrence of HE episodes.
“There are treatments available that act on the gut microbiome such as lactulose and rifaximin that can be used for this. During the acute phase, the precipitating factors for HE need to [be] investigated and treated and during the prevention of recurrence, we need to focus on adherence to medications, and determine if liver transplant is an option,” Bajaj said.
In addition to medication, Franklin says lifestyle modifications, such as diet, exercise, and moderating fluid intake can also help.
“Once treated, you can maintain a normal lifestyle and you can temporize the symptomatology, but it’s rare that once the liver becomes cirrhotic it ever returns to a normal state, so you’ll always remain on therapy or other medical care once diagnosed,” said Franklin.
However, he adds that appropriate medical care can make a difference.
“If you look at someone like Landree who was very sick… if you met her on the street today you wouldn’t know she’s suffering from liver complications especially HE. She’s alert, she’s awake, she’s oriented, she’s conversive — all because she’s on optimized medical treatment,” he said.
Today, Sarata takes 20 pills a day, and her HE is under control. She says she can tell when a HE attack is underway.
“My legs get weak and my eyesight gets wavy. I can now ground myself when the HE attacks come on,” she said.
Now that she feels better, it’s hard for her to think of the 3 years she struggled to find treatment.
“I couldn’t be present anymore. I was suicidal, helpless and hopeless. When I was diagnosed, my prognosis was 3 to 5 years. Now that I’ve got the right medication and can live a life again, it’s great to know that no matter what happens with my body going forward with cirrhosis, I know I’ll always be clear in the head and mentally stable to deal with it,” Sarata said.
She hopes to spend the rest of her days spreading awareness about cirrhosis.
“There’s a stigma around cirrhosis; everyone thinks you are an alcoholic, but that’s not the truth. There are multiple different kinds of cirrhosis. The more I can get out my story, the more people I can touch and inspire to push for the best results,” she said.
Cathy Cassata is a freelance writer who specializes in stories about health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.