Living With MASH: My Tips to Manage Liver Disease

“You have fatty liver disease” or “you have MASH.” The good news is that more people are hearing these words than ever before. It’s not good news that you are sick, but it is good news that your physician is more likely than ever before to recognize that your liver is struggling. You must know your diagnosis to improve your health.

My journey with MASH and a liver transplant

I was diagnosed with hepatic cancer and MASH in 2017. I had cirrhosis, and my only symptom was a low platelet level. I had that symptom, though, for 3 years before any doctor recognized what was happening to me. I was told I needed a transplant, or I would die. This was a complete shock to me.

At no point in this process did my transplant team talk with me about managing this disease. I was never told to lose weight or keep my weight down. In fairness, I was a normal weight after my transplant, and before the transplant, my liver was so destroyed that it might not have changed the outcome. But even on discharge, I was never told what to do. They managed my diabetes with insulin, which I had never taken in my life.

It took me over a year to begin to recover from my transplant experience and from COVID-19, which I contracted a week later, in 2021. During my recovery, I began to have post-transplant imaging that showed that I had recurrent fibrotic changes in my NEW liver. I was petrified because I had been in liver failure for several years prior to my transplant, and I did not want to return to that disease state. I couldn’t manage my health with no information, however. After my surgery and at my insistence, I saw a gastroenterologist in the same hospital. He talked with me about limiting sugar and put me on Ozempic for my diabetes.

As I was doing my own research, I remember thinking, “Why are these doctors withholding information from me? Do they not know the information I was finding in the literature? Are they affected by medicine’s focus on disease vs. prevention?”

Why so many people aren’t told how to manage liver disease

In 2022, the National Committee for Quality Assurance (NCQA) published a white paper on the state of medical diagnosis and treatment of what was then called fatty liver disease. Panelists in the white paper group demonstrated the lack of knowledge among PCPs about the prevalence and significance of fatty liver disease. They realized that these primary care physicians lacked expertise in using liver risk assessment tools.¹

Many physicians at that time did not recognize the seriousness of the diagnosis and the potential for a liver transplant. They cited research that showed that only 31% of providers identified fatty liver disease as a clinically important diagnosis in their practice, and only 33% referred patients with suspected disease to a specialist. Many medical schools did not even teach about fatty liver disease.¹

Previously, most liver transplants were necessary due to alcoholic cirrhosis. The number of transplants due to MASH was increasing rapidly and is still rising. At that time, there were no medications to treat fatty liver disease. This called for a significant educational effort for physicians and the development of standards for diagnosis and treatment. This did not happen until several years later. This white paper demonstrated that many physicians lacked the skill or knowledge to even identify the problem in their patients.

Diabetes was linked with fibrosis in the liver as early as the mid-1900s. Today we know that while fatty liver disease is present in at least 25% of people, 50 to 70% of people with diabetes have MASLD or MASH. Still, the standard of care requiring testing for MASLD in people with diabetes did not occur until 2024. It coincided with a significant global process that changed the disease's name and established standards for the evaluation and treatment of MASLD.^2,3

Helping others learn to manage their liver disease

After my experience, I was very motivated to help people avoid delays in diagnosis and treatment. I even wrote a book about it, which also told people what to do to manage their health once they were diagnosed with MASLD or MASH. The Social Health Network recently republished an article I wrote about having a transplant. When I read the comments, I realized that many people still do not know how to manage liver disease even after so much work has been put into clarifying the nature of metabolic liver disease. I found that alarming.

9 tips to manage liver disease with your doctor

So, here are my tips for managing liver disease and working with your physician to get you to the point where you feel you can manage your disease going forward. I am not a physician. These suggestions are based on what I have been told to do and what I have learned through my own experience, and they are supported by scientific literature.

Ask to be tested if you have diabetes

If you are diabetic and you have not been diagnosed with liver disease, tell your doctor that you need to be tested for MASLD. Remember that you may not have symptoms, but you are at very high risk of developing liver disease. You may want to ask for a referral to a gastroenterologist.

Get a referral to a specialist

If you are diagnosed with MASLD, you definitely want a referral to a gastroenterologist. If there are no gastroenterologists in your community, ask your physician whether there are any clinicians who could help with your treatment. If you cannot see a specialist, work with your physician to develop a detailed treatment plan.

It is recognized that some physicians still view liver disease as a relatively benign process. It is not a benign process, and some people progress to MASH, which is a very serious disease and can result in you needing a transplant. A transplant is significant surgery and requires you to be on problematic medications for the rest of your life. A transplant is something to be avoided when possible.

Ask about imaging to stage your disease

It used to be that the only way to determine the amount of fibrosis (scarring) in a person’s liver was to do a liver biopsy, and your doctor may still use that procedure as part of your diagnosis. Newer imaging processes have been developed, and you should discuss each with your doctor.

Again, your community may not have access to all these imaging devices, but if possible, traveling to get them done is worthwhile. The different types of imaging available include ultrasound, CT scans, MRI, MRE, elastography, and FibroScan. Ask your doctor to discuss imaging with you so they can decide what's best for your situation. It is essential that they see your liver and evaluate the stage of your disease. Ask your doctor to explain which disease you have (NAFLD/MASLD or NASH/MASH) and to get a baseline/diagnosis through imaging.

Make lifestyle changes to keep your liver disease from progressing

This is a progressive disease. If you do not change your lifestyle, it may get worse, and I encourage you to manage your disease in partnership with your physician. Ask your physician for a referral to a nutritionist. Ask them for suggestions about how to manage weight. Consider GLP-1 medications and discuss them with your doctor.

Modifying drinking habits

One of the easier changes to make may be to change what you drink every day. Try to avoid drinking anything with sugar or artificial sweeteners. Read the labels, and you may be amazed at how much sugar is in what you are drinking. Coffee is great for your liver, but adding sugar and artificial sweeteners can add up. What we all need to do is drink water!

Ask your doctor about medication for liver disease

There is now a medication for MASLD called Rezdiffra. I cannot take it because it is not approved for use in people who have had a liver transplant. Ask your doctor about it.

Move every day

Exercise. Every day, if possible. Start small and increase as you go. Find an exercise buddy. Whatever you need to do to increase the movement in your life will be positive. If you are diabetic, walking after every meal can be helpful. Just get moving.

Cut out added sugar

My gastroenterologist told me to get as close to zero added sugar in my food and drink as possible. Fruit and dairy have natural sugar and are part of a healthy diet. One of the reasons fruit works for you is that most of it contains fiber. This limits the glycemic reaction in your body. And juice is NOT your fruit serving, even if it has “real” fruit in it. Most juices have no fiber and a lot of added sugar. Read the labels!

Make a realistic plan for managing your liver disease

See what you can do! This is not rocket science, but it is hard. Find a health coach or a patient advocate if you need help. Most of us are not told what to do. Make a realistic plan for yourself with clearly defined goals. Every little change you make will help.