The Multiple, Complex Challenges of Living with and Managing Liver Disease

Amreen Dinani, MD

I spoke to a patient, a 63-year-old woman who immigrated to the United States from Central America in 1978, about her experience living with liver disease. She is now an American Liver Foundation (ALF) NAFLD patient advocate who was diagnosed with autoimmune hepatitis and NAFLD in 2005. After experiencing the devastation of her diagnosis, she has managed to learn to live with the disease and wants to help others achieve better quality of life.

The Journey to a Diagnosis

Our patient had been diagnosed with autoimmune hepatitis for several years and doing well. She developed pain in her upper right abdomen and saw three specialists. They assumed she was an alcoholic even though she told them she didn’t drink. She talked to her primary care physician who sent her to a liver specialist.

The doctor spent 90 minutes talking to her and, based on blood work every three months and ultrasounds every six months, determined that her autoimmune hepatitis medication- prednisone, was causing fatty liver. It took three liver biopsies to confirm the diagnosis of NAFLD on top of autoimmune hepatitis.

Helpful Tips About Healthy Diet and Finding Support

This woman has made huge changes to her lifestyle. Sheexercises regularly, meditates, drinks plenty of water and has changedher eating habits by following a healthy diet and avoiding sugary drinks, such as soda and concentrated juice drinks. She prepares her own food and only takes medicine prescribed by a physician, who do so with caution because she has been at the last stage of liver cirrhosis for the last three years.

Though difficult, she has learned to avoid greasy foods found in fast food restaurants, eats abundant greens, incorporates fruit into her breakfast and vegetables for lunch. She’s learned to prepare food in different ways by sautéing, baking or grilling her food using olive oil. She does not fry her food, which she may have done previously. She avoids additives and salt, relying instead on herbs and spices.

Before trying new foods, she and her caregivers research its possible impact on the liver. When she buys groceries, she avoids red meat, high fructose corn syrup and anything with more than five ingredients. She also practices portion control and learned that the palm of your hand is the amount of meat you should eat, which for her is mostly fish, chicken and occasionally lobster.

She advises people tofollow their doctors’ orders and, once diagnosed, find a support group to learn and share information with others living with the same disease. People can find information online from organizations, such as the American Liver Foundation or NASHNET, and Facebook groups, such as Living with Cirrhosis, Living with Fatty Liver/NASH.

She is a true reflection of what it is to live with chronic liver diseases and how changing in your lifestyle can improve liver health and overall health.