Road to Diagnosis: Susan Horava’s MASH Story

For years, I trusted the words, “You’re healthy,” at my annual physicals. 

As someone diagnosed with polycystic ovarian syndrome (PCOS) at 16, I had battled my metabolism my entire life, watching my weight yo-yo by 50 pounds multiple times. As an adult, when my weight crept up, I’d edge into pre-diabetes; when it dropped, my A1C numbers improved. 

To stabilize my metabolism, I was eventually prescribed a common drug for insulin resistance. I thought I was doing everything right. But a silent threat was brewing—one that went unnoticed for over a decade.

For seven years, my bloodwork showed elevated liver enzymes, which are types of proteins that speed up chemical reactions in the body. Specifically, the liver enzymes alanine transaminase (ALT) and aspartate transaminase (AST) were high, which can signal liver cell damage or fatty liver disease.

I felt fine, rarely drank alcohol, and my primary care physician brushed off the blood test results, saying, “Don’t worry about those numbers.” So, I didn’t. 

When I moved out of state, a new doctor noticed the same elevated enzymes. She ordered tests for hepatitis and an abdominal ultrasound. The hepatitis test came back negative. But the ultrasound revealed metabolic-associated fatty liver disease (MAFLD).

The advice? “Lose a little weight, and you’ll be fine.” No one mentioned the potential for serious consequences or that fatty liver could be reversed if caught early. 

Years passed, and I continued my relatively healthful lifestyle: No meat, plenty of fruits and vegetables, and occasional exercise. I indulged in sugary foods and drinks without a second thought. I was known as a good baker and enjoyed a daily drive-thru visit to get my caramel coffee drink. I was ignorant of the fact that everything I drank or ate affected my liver. 

My doctors and I ignored the persistent high liver enzymes, assuming they were no big deal.

Nearly 15 years after those first liver blood tests, my body started sounding alarms. Severe muscle contractions jolted me awake at night. A dull pain lingered in my upper right abdomen, accompanied by frequent indigestion and uncharacteristic daytime fatigue. Bloodwork revealed anemia, and iron supplements were prescribed without explanation.

The fatigue eased, but the pain and indigestion persisted. I started taking pills daily for stomach bloating and gas pain. Frustrated when nothing eased my burning indigestion, I turned to a gastroenterologist. As he reviewed my file, his concern was palpable. “Why were these symptoms and bloodwork ignored?” he asked.

The fatigue, high liver enzymes, pain, indigestion, and muscle contractions were all red flags of a struggling liver. He ordered a battery of tests: Genetic screening for liver disease (alpha-1), an enhanced liver fibrosis (ELF) blood test to check for scarring, blood clotting assessments, and imaging.

At the time, I was perplexed and questioned if this was necessary. After all, it was just indigestion… Or so I thought.

While at work, a notification pinged on my phone—my test results were in. The ELF test showed significant fibrosis (scar tissue), indicating at least metabolic-associated steatohepatitis (MASH). MASH is a more severe stage of MAFLD, meaning my MAFLD had advanced.

A frantic online search confirmed the gravity of the situation. I already knew about the fat in my liver, but MASH meant I now had inflammation and liver damage.   

Later that day, my gastroenterologist called, stunned by the results. A liver biopsy was ordered. Three days after the procedure, he called again, his voice heavy with regret, “I’m so sorry. You have metabolic-related cirrhosis.”

Cirrhosis. The word hit like a freight train. Permanent scarring in the liver. I didn’t drink or take drugs. How could I have cirrhosis? Turns out MASH can lead to cirrhosis. My liver, scarred beyond repair, would never be the same. Anger surged, not just at the diagnosis, but at the years of dismissed warning signs. Why hadn’t anyone acted on those blaring indicators?

I channeled my frustration into action, joining Liver Education Advocates to educate others about the dangers of fatty liver disease. I want to end the misconception that liver disease is solely tied to alcohol or drugs.

Today, I’ve transformed my lifestyle: No added sugars, home-cooked meals, and regular exercise. My liver is “happy” but permanently scarred. That doesn’t have to be your story.

The liver, the organ second in size only to your skin, performs more than 500 vital functions. Knowing the importance of your liver and the potential complications of fatty liver disease, including MASH, can help you take the right steps now. In its early stages, fatty liver is reversible. Had I known this 15 years ago, I could have acted to heal mine. 

If you have diabetes, PCOS, obesity, or elevated liver enzymes, don’t wait for symptoms to demand attention. Ask your healthcare provider about testing options, such as an ultrasound or a fibrosis test. Don’t let silence steal your health. Speak up, get tested, and take control. Your future self will thank you.