Road to Diagnosis: Aroosha Sarrafi’s MASH Story

Despite my father previously being diagnosed with liver cirrhosis (permanent damage and advanced scarring of the liver) and receiving a liver transplant in 2013, my own liver issues went undiagnosed for years. My doctors ignored high liver enzyme counts in my bloodwork, attributing it to extra weight and possible thyroid issues.

By the time my liver condition was finally diagnosed, I had reached stage 3 metabolic dysfunction-associated steatotic liver disease (MASLD). This MASLD stage, known as metabolic dysfunction-associated steatohepatitis (MASH), is characterized by fat buildup, inflammation, and scarring of the liver.

This was one stage before my dad’s condition, cirrhosis, which can be life-threatening. If the doctors had waited any longer, I would have been at serious risk of needing a liver transplant. And if they had caught my MASH earlier, many of my health issues—like my weight—could have been resolved.

My father was diagnosed with liver cirrhosis after a surgeon saw that his liver was scarred during a gallbladder removal surgery. Until then, I had never heard of cirrhosis. My dad’s liver problems weren’t related to alcohol use, and he didn’t have a family history of liver problems that we knew of.

I asked the doctors whether my brother and I should be tested for cirrhosis, as there was a chance the condition could be genetic. But because there was no known family history of liver disease, they recommended against testing. Later, it became clear there was a genetic link.

Five years after my father’s liver transplant, in 2018, I started experiencing a lot of pain in my stomach. I stopped being able to digest any fats without having stomach problems.

I first found myself reacting to fatty food when my brother took me to a steakhouse in New York City for my birthday. I had never had an issue with steak before, but as soon as we left, I was bloated and nauseous. I thought it might be food poisoning, but I was the only one who was sick.

Then I noticed even healthy fats like fish oil caused symptoms, which often included nausea, bloating, and pain in the upper right corner and middle of my stomach. I would get so bloated that I couldn’t comfortably wear my normal clothes; I had to wear something loose.

I started keeping a diary to track which foods I ate and my symptoms. Certain oils, like olive and sesame oil, were okay, but fatty meats caused me issues. The symptoms got worse day by day. Aside from meats, other fat-rich foods like avocados, walnuts, and pistachios made me sick.

I became vegan to try to manage symptoms and improve my general health. I also saw doctors regularly. I’d had a gastroenterologist (a doctor specializing in conditions of the digestive system) since childhood for stomach issues, so discussing my diet and digestive symptoms was not new to me. I asked my doctor what was wrong. My diet was the best it had ever been, I wasn’t eating sugary or fried foods, and I was having worsening stomach problems.

I knew there had to be an answer. I worked with a nutritionist. I went to an endocrinologist (a doctor specializing in hormone-related conditions) to test my thyroid and look into other possible hormone changes, like menopause.

But my doctors only seemed to have one answer: I was overweight. My doctor knew I had fatty liver (excess fat in the liver cells). I was getting bloodwork done every year for my annual checkups, and my liver enzymes were so high. My doctors just said the levels were high because I had fatty liver, which was due to being overweight. Their answer was to lose weight, but it wasn’t that simple.

I was following a vegan diet, eating nutritious foods low in saturated fats and sodium. I kept my portions small. So, why wasn’t I losing weight? What was wrong that I couldn’t lose the weight? I feel as though the doctors weren’t paying attention. I see now that they weren’t asking the right questions.

I often got the sense that they assumed I was being dishonest about my diet. Since I was still gaining weight, what else could it be? They weren’t considering all the possible underlying issues. Looking back, it would have been so simple for them to run a few more tests.

My endocrinologist saw that my liver enzymes were high, but again, he was focused on my weight. Even though I did not have high blood sugar, the doctor prescribed me an antidiabetic medication to help me lose weight. But stomach pains and nausea were common side effects of this medication, which only contributed to my other digestive symptoms.

Finally, I went to see my gastroenterologist again, who was also my dad’s doctor. He checked my liver enzymes, and when the levels came back high, he suggested I do a FibroScan test. A FibroScan is an ultrasound of the liver that measures the thickness of the liver and can show any fat buildup and scarring on the liver.

My gastroenterologist called later to ask me to come into the office to discuss the FibroScan results. I sent my husband in first to hear the news, so he could prepare me. Since my doctor knew what I went through with my dad, he could barely make eye contact with me as he said, “I’m so sorry, you have what your dad has.”

The FibroScan results showed I had liver fibrosis (scarring) at nearly stage 3, so I was diagnosed with MASH. This stage of fibrosis is the last stage before cirrhosis, so while I didn’t have my dad’s exact diagnosis, I was at risk of progressing to his condition.

In that moment, I felt like the whole world was crashing down on me. The only thing I could picture was myself lying in a bed in the hospital, the same as my father.

Leading up to my dad’s liver transplant, I had been a primary caretaker for him, going to the hospital, seeing his tests and scans, and signing consent forms. Now that I was in my father’s position, every scene in my head featured me as my father and my husband as my caretaker.

I started imagining myself as my father after his transplant surgery, with tubes in my mouth and nose and my hands tied down to the bed to make sure I didn’t rip them out. That thought terrified me; I told my husband I would never forgive him if he tied me to the bed. He promised he wouldn’t do that to me. I started crying. It was the saddest moment of my life.

For a day or two after my diagnosis, I was devastated. But I’m a big believer that if someone wants to do something, they can make it happen. I used to teach at a university, and the first thing I would tell my class was that I do not understand the phrase “I can’t.” There is no such thing.

So, I kept this in my mind, and I started moving forward. I need to be here for my family, and I need to heal my liver, and I’ll do everything I can to make that happen.