My Unexpected NASH Diagnosis

In 2017, I quit my job and drove across the United States for three months. My only symptom up to that point was fatigue. I thought I was just getting older (I was 63). Because heart disease killed most people in my extended family, I thought maybe something was wrong  with my heart.

But, at the end of my trip I had to call my brother who lived in California and ask him to drive me home. I was too fatigued to continue. But, I never considered liver disease.

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

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

Liver disease?

No one in my family had ever had liver disease. It was really hard to wrap my head around liver disease, and 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 transplant, two 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. This qualifies as “excessive."

Cancer

The next thing I had to do was to deal with the cancer. Three tumors in my liver were treated with radiation, and they shrunk. If they had not responded to treatment, I would’ve been ineligible to be on any liver transplant waiting list.

My next step was to be listed through a Transplant Center for a liver. 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. They evaluate your mental health, your financial situation, and your support system at home.

Transplant?

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

Some questions to ask are: Do you have MASLD/NAFLD or do you have MASH/NASH? MASH/NASH is more serious and may require a transplant.

My disease required me to have a transplant. If your liver disease is not that advanced yet, you might consider asking about Resmetirom, the only FDA approved medication to delay harm to your liver. And ask your doctor what else you can do to deal with your liver disease. Lifestyle changes can positively impact your liver.