Living with Fatty Liver Disease and Waiting for a Transplant

Ten years ago, I sat in a doctor's office and heard the words that would change my life forever: "You have NAFLD." Fatty liver disease, they called it—nonalcoholic fatty liver disease, to be specific. And what was the advice given to me? "Lose weight, and you'll be fine." Those words echoed in my mind for years. I followed every instruction. I did what I was told. But here I am, ten years later, and I am not fine. I am sick, and it’s far worse than anyone ever anticipated.

At first, it seemed like something manageable. But as the years passed, I found myself being admitted to the hospital over and over again. Thousands of dollars in medical bills piled up. Hundreds of tests, consultations, and visits with specialists led me nowhere. Every time, it was the same story: gastritis, acid reflux, ulcers.

But I knew in my gut that something more was wrong. I could feel my body deteriorating, but no one was listening. It took five years of being told “it’s just gastritis” before someone finally took me seriously.

“Losing weight won’t fix everything. I am living proof of that.”

I remember it like it was yesterday—September 2019. Another hospitalization for "gastritis," but this time, I wasn’t going to let them send me home with more vague answers. I told my husband, “There is something profoundly wrong with all this.” My husband, bless him, realized just how serious I was. He knew I hated hospitals, but this time I was *asking* to go to another one. That’s when he snapped. He confronted the doctor, demanding they take a deeper look at what was happening to me.

Finally, they listened. A CT scan and more bloodwork followed, but again, they sent me home with the same diagnosis: gastritis. I was crushed. But I didn’t give up. I went to a specialist, thinking surely they would figure out what was wrong. I walked into the GI’s office two weeks later, hopeful that this would finally be the turning point. Instead, it was the moment that shattered everything I thought I knew about my health.

“The doctor looked me in the eye and said, ‘Well, we both know you have cirrhosis of the liver.’”

Cirrhosis. I couldn't believe what I was hearing. A disease commonly associated with alcoholics, and yet, I had never been a drinker. Not even socially. The disbelief hit me like a freight train. I looked at the doctor and said, "No, we both don’t." He realized then that the hospital had never told me. I could see the regret in his eyes as it dawned on him that I truly had no idea. It wasn’t just in my head—I was seriously sick, and nobody had told me.

The liver biopsy in July 2020 confirmed what I feared. The doctor had been confident that my cirrhosis was early, but the biopsy revealed otherwise: severe cirrhosis, with "very little pink." My liver was in far worse condition than anyone had anticipated.

“My life now is waiting. Waiting to get sick enough for a transplant.”

This past year has been an overwhelming challenge. The hardest part is the waiting—waiting until I am sick enough to qualify for a liver transplant. In the meantime, I try to manage my symptoms. I’m on Zofran for the nausea, but I can barely keep weight on. I’m exhausted all the time. My husband, who is also my supervisor, has been my saving grace. He, along with our close-knit team, helps me keep my job going as much as I can. But the reality is sinking in. My working days are numbered.

Soon I will retire. Not because I want to, but because my body is forcing me to. My husband, my children, and my doctor have all made it clear: it’s time to take care of myself. It’s time to face the truth—I am sick, and pretending otherwise is only making things worse.

“I’ve shed so many tears because life as I know it is coming to an end.”

Retirement was supposed to be something I looked forward to, but not like this. Not because my body is breaking down. I’ve been a go-getter my entire life, and now, I’m being forced to slow down. It’s devastating. The life I knew, the busy, energetic me—it’s fading away. And it’s terrifying.

But I know I need to take this step for my health, for my family, and for myself.

I’m sharing my story in the hopes that someone out there will listen, and that others with fatty liver disease will push for answers sooner than I did. Don’t wait until it’s too late. Don’t let anyone dismiss your symptoms. I’ve learned the hard way that fatty liver disease is a slow, silent killer. But it doesn’t have to be if we demand the care we deserve.