You've Been Diagnosed With Liver Disease—Here's What You Can Expect

The liver is the largest internal organ of the human body, and with its responsibility of aiding digestion by detoxifying the body, it is arguably one of the most important organs we have.

If you've been diagnosed with a diseased liver, understanding how to care, maintain and manage your treatment is crucial.

Understanding liver disease

The liver is about the size of a regulation football and is located on the right-hand side of your abdomen.

The liver performs the important task of removing toxins and impurities—such as alcohol, drugs and preservatives—from our blood. The liver is also important for converting food to energy and storing it as glycogen, and fat-soluble vitamins, such as vitamins D and E, are also stored here, too.

When liver disease develops, the organ's ability to perform its metabolic, detoxification and storage functions can be impaired. Although many people know about cirrhosis of the liver, end-stage liver disease, it's vital to pay attention before you get to that stage.

"Many different things can culminate in liver disease, like viral hepatitis, hepatitis B and C," said Thomas Schiano, M.D., medical director for Mount Sinai's liver transplant unit in New York City. "Fatty liver is the most common cause, but also people who are overweight and have diabetes. Liver disease runs in families, [so there are] genetic predispositions and autoimmune conditions."

Recognizing the symptoms

"Liver disease is very often not picked up until too late," Schiano added. "Once you start having symptoms like eyes turning yellow, the buildup of fluid in abdomen or legs, confusion or bleeding, it's already advanced. The most common symptom is fatigue, but that can be from anything."

Other signs you may have liver disease include abdominal pain and swelling in the legs and ankles, a darker urine color and pale stool color, loss of appetite, nausea and vomiting, a tendency to bruise easily and itchy skin.

One of Schiano's patients, Osari, who lives in Brooklyn, New York, had to undergo a liver transplant, and explained, "My liver diagnosis was primary sclerosing cholangitis, which was found out after a year of suffering with ulcerative colitis, an autoimmune condition. It's quite hard to pinpoint the genesis of my liver disease symptoms. For years, my focus was tapering the flare-ups from ulcerative colitis. Looking back with more knowledge, the yellowing of my eyes was the sign."

Although many people know about cirrhosis of the liver, end-stage liver disease, it's vital to pay attention before you get to that stage.

The earliest indication of liver disease is picked up from blood tests that the liver is not doing well, triggering follow-up looks like CAT scans, biopsies and other interventions.

"Patients can also experience fluid in the abdomen—known as ascites—kidney problems and bleeding from varicose veins that line the food pipe in the stomach," Schiano said. "Toxins can build up and cause you to experience confusion, being off-balance and becoming forgetful. All these can cause issues in their own right. Blood thinning because the liver isn't making the clotting enzyme, then toxins cause you to trip and fall, hit your head and you bleed to death."

Additionally, when people have cirrhosis of the liver, they are prime candidates for developing primary cancer of the liver. No matter the stage, you're at increased risk. As such, periodical scans are recommended.

What are the risks?

Although liver disease affects all ethnicities, there is more alcohol use in certain socioeconomic classes. Gender risk factors exist as well. For example, primary sclerosing cholangitis affects mostly men, and 90 percent of diagnosed patients of primary biliary cholangitis are women.

In general, men develop liver conditions more than women and require more liver transplants because they tend to consume more alcohol and carry more weight.

Schiano mentioned, "People who use drugs can pass hepatitis through needles. Also, people with a normal liver can take too much Tylenol, causing liver damage that necessitates a liver transplant. We get one every week, and some of them die."

The major determining factor, however, is access to the right healthcare. Social determinants of health have proven that racial disparities affect how Black Americans and Hispanics access medical care, which impacts access to liver transplants.

Treatment options

Schiano emphasized that treatment options "depend on the condition, and that seeing a specialist, like a gastroenterologist for follow-up, is important.

"Take into consideration the source of the liver disease," Schiano added. "For alcohol, cessation of drinking and rehabilitation is necessary. In the instance of fatty liver, patients need to lose weight and change their diet. There's great medication for viral hepatitis. Depending on severity, disease can be reversed or the problem cured. If complications exist, there are many things that can be done to prevent severe outcomes."

In other cases, such as if cirrhosis has already occurred, a liver transplant is necessary.

It's important to understand when liver disease crosses over into a condition where failure is a possibility. Liver disease is any issue that causes inflammation or damage to functionality, whereas liver failure is when the organ no longer has the ability to carry out some vital tasks. There are four stages of liver failure:

• Inflammation, where the liver becomes enlarged.
• Fibrosis, during which scar tissue begins to replace healthy tissue.
• Cirrhosis, where scarring is severe and some functionality is impaired.
• End-stage liver disease (ESLD), in which liver has all but ceased to function. There is nothing that can be done to reverse the damage done and a liver transplant is required.

At any stage of liver failure, unhealthy cells can multiply and become cancerous. The cirrhosis stage is particularly susceptible to developing liver cancer.

Life after diagnosis

More than 4.5 million Americans are diagnosed with liver disease, almost 2 percent of the population. In 2019, liver disease was responsible for 44,358 deaths in the U.S. This tragic statistic is compounded by the fact that many people with the condition are unaware of their illness.

"There was that initial shock of being way more ill than I expected," Osari said. "At first, I couldn't grasp the magnitude of what was pending when it was first explained to me, by my then physician, because I was still getting along fine and doing my daily routine with relative ease. Then out of the blue it just hit me. I came in from work one day and climbed nine flights of stairs and simply wasn't able to get to the 10th to open my door."

We also need to take into consideration the stress on caregivers from those with chronic liver disease. Domestic situations can become volatile if an individual is drinking alcohol excessively. There's also the fact that people are often in the prime of their life when diagnosed. These can be emotional times and you may need to consider third-party help to cushion the impact of this possibly life-threatening diagnosis.

"It's been three and a half years since my transplant, and I'm only now regaining some semblance of my life before cirrhosis," Osari said. "I'm able to physically use my body more freely without much fear, but I'm still cautious. My medication has decreased a lot to where it's now just anti-rejection meds and ulcerative colitis tablets twice daily. Along with my bloodwork, scheduling to monitor my health is every three to four months unless I feel or see abrupt changes."

Here's the final word on preventing or managing liver disease.

"Get your hepatitis vaccinations," Schiano said. "Get access to care. Check your blood test results. Lose weight. [Get a] yearly physical so that bloodwork can catch things and [allow you to] follow up if things are irregular."