My Unexpected NASH Diagnosis and Journey to a Liver Transplant

In 2017, I quit my job and drove across the United States for 3 months. My only symptom up to that point was fatigue. I thought I was just getting older (at the time, I was 63).

Because heart disease had killed most people in my extended family, I thought maybe something was wrong with my heart. I focused on my cardiovascular health but overlooked other aspects of my overall organ health.

At the end of my trip, however, I had to call my brother who lived in California and ask him to drive me home. I was too fatigued to continue. Even then, I never considered that I might have liver disease.

Receiving a life-changing diagnosis

When I got home, I made an appointment with my primary care physician. Everything seemed normal, except that my platelet count was low. Three years earlier, she had referred me to a specialist for low platelets who had released me with no findings. He performed bloodwork but did no imaging.

This time, she referred me to the same practice but a different physician. This doctor knew immediately what was wrong with me. He subsequently confirmed it with imaging. I had NASH and liver cancer. I was told I needed a liver transplant or I would die.

Understanding the causes of liver disease

Liver disease? No one in my family had ever had liver disease. It was really hard to wrap my head around this diagnosis. It was even harder to understand that this disease was going to kill me.

I have since come to realize that my NASH was probably caused by excessive consumption of diet soda. Three years after my 2021 organ replacement, 2 studies were published that verified that this is one potential pathway to NASH and a transplant.

I drank diet soda all day long for years. I never drank coffee and rarely drank water. I now realize that this qualifies as “excessive" consumption.

Treating liver cancer before the transplant

The next thing I had to do was to deal with the cancer. Three tumors in my liver were treated with radiation, and they successfully shrank.

If they had not responded to treatment, I would’ve been ineligible to be on any liver transplant waiting list. Maintaining stability in my condition was essential to staying eligible for a new organ.

Navigating the road to a liver transplant

My next step was to be listed through a transplant center. I was listed at 2 hospitals in 2020, a little over 2 years after my diagnosis.

This process is time-consuming and difficult. The hospitals require every organ in your body to be assessed to ensure you can survive the surgery. They also evaluate your mental health, your financial situation, and your support system at home.

Next steps for your own organ health

Today, there are clearer guidelines and new tools for diagnosing liver disease. CT scans, MRIs, elastography, liver biopsies, and bloodwork may all be used. When you are diagnosed, make sure you understand exactly what you are dealing with.

One question to ask your doctor is whether you have MASLD/NAFLD or MASH/NASH. MASH/NASH is more serious and may eventually require an organ replacement.

My disease eventually required me to have a liver transplant. If your liver disease is not yet advanced, you might consider asking about Resmetirom. This is currently the only FDA-approved medication to delay harm to your liver.

Finally, ask your doctor what else you can do to deal with your liver disease. Lifestyle changes can greatly improve your long-term organ health and overall well-being.