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A Patients Guide to End Stage Liver Disease (ESLD)

By Debi Palmeri, RN , Liver Transplant Coordinator, Hartford Hospital

Patients are said to have end-stage liver disease when they develop scarring (cirrhosis) in the liver. This means that healthy liver tissue has begun to be replaced by fibrous bands of scar tissue that run throughout the entire liver. As this process continues to progress, there are fewer healthy, working liver cells and more and more scar tissue. Unfortunately, it can be difficult to determine just how much reserve the liver has at any given time, as the liver can lose more than half of its normal ability without any physical symptoms or change in blood work. It is not uncommon to have a patient come into the emergency room with a major complication of ESLD, such as vomiting blood (upper GI bleeding), who had no idea they had anything wrong with their liver.

Many patients become understandably frightened when they are told they have any end stage organ disease and fear that this means they are nearing the end of their life. However, this is not always the case. In the case of liver disease, one of the important factors is whether or not the cirrhosis is compensated or decompensated and what can be done to prevent additional liver damage. What does this mean? It means that you can have one individual with well compensated cirrhosis that can lead a fairly normal life and another person with decompensated cirrhosis that is quite ill. In some cases, a patient can go back and forth between these two stages. They can develop a complication that is treated and stabilized and then return to their baseline. A good example of this is an episode of vomiting blood cause by varicose veins (varices) that rupture in the esophagus. This is treated by medication and localized, direct treatment of the varicose veins. If a period of time passes and the treatment is successful with no additional bleeding or other problems related to the ESLD, the patient is considered to have recompensated.

So what exactly determines if we consider a patient to be compensated or decompensated? If a patient has cirrhosis but is not experiencing any complications, we consider them to be compensated. What do we consider a complication? Bleeding from the upper or lower GI tract such as vomiting blood or passing large amounts of blood rectally, mental confusion, fluid accumulation in the abdomen (ascites), evidence of kidney failure, and jaundice or yellowing of the skin are all evidence of decompensation. These symptoms tell us that the liver is having trouble doing the important things it needs to do to keep us healthy. The good news is that often your doctor can manage these symptoms through medication, diet and fluid restriction. While this will not reverse the scarring in your liver, careful medical management can help you feel better. The other important factor is removing the precipitating cause of the liver disease whenever possible. Treating viral hepatitis, stopping irritants like alcohol and drugs and losing weight can all help your liver feel less stressed and may decrease inflammation and slow or prevent further scarring. One of the most important steps to take if you have cirrhosis is to find a gastroenterologist or hepatologist who is knowledgeable about liver disease and its treatment. Your primary care doctor, a hospital- based physician referral service or even the American Liver Foundation can recommend a respected liver specialist in your area. The relationship between you and your liver doctor is vital to your health. Patients with ESLD should be vaccinated against hepatitis A and B and undergo regular screening for liver cancer. Even if you are feeling well, you should be under close medical supervision and see your doctor on a regular basis for the rest of your life. Depending on the cause of your ESLD, your doctor may want to begin treatment of the underlying cause of your liver disease. Patients with hepatitis C now have new effective drugs to clear the virus from their body. While not yet proven, it is hoped that a patient with hepatitis C related cirrhosis will gain benefit once the virus is gone and not attacking their liver.

In summary, it is very important if you or anyone you care about is diagnosed with end stage liver disease/cirrhosis it is vital that you be under close medical supervision and see your liver doctor on a regular basis. This is true whether or not you have any symptoms. Many problems that develop as a consequence of cirrhosis can be prevented or managed by medication, watching your salt and fluid intake and certain procedures like treating the varices in your esophagus. If a new liver seems like the best solution for your ESLD you will be referred to a transplant program. However, keep in mind no matter your medical treatment, a healthy lifestyle that includes: no alcohol, less stress, plenty of sleep, exercise and a healthy diet will help your liver keep do its very important job. A positive attitude, the support of family and friends and a good partnership with your doctor can help you cope with your liver disease.

Page updated: June 18th, 2014


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