Cirrhosis:

A Patient’s Guide
The full text of this document can be found and downloaded at www.hepatitis.va.gov. This document is 

not copyrighted and users are encouraged to print and 

distribute as many copies as they need.
Cirrhosis: 

A Patient’s Guide

Version 1 (March 2007)

VA Hepatitis C Resource Center Program 

and National Hepatitis C Program Office 

Veterans Health Administration 

U.S. Department of Veterans Affairs

www.hepatitis.va.gov
 HCRC VA Hepatitis C Resource Centers
 Cirrhosis: A Patient’s Guide

Table of Contents

Contributors......................................................................5

Introduction: What is this handbook for?........................7

What does the liver do?....................................................8

What is cirrhosis?..............................................................9

What happens when you have cirrhosis?........................10

What are the symptoms of cirrhosis?..............................12

What is decompensated cirrhosis?..................................13

1. Bleeding varices (internal bleeding)................13

2. Ascites (fluid in the belly)................................14

3. Encephalopathy (confusion)............................15

4. Jaundice (yellowing of the eyes and skin)........16

How do you know if you have cirrhosis? ........................16

What will your health care provider do about 

cirrhosis?..........................................................................17

What can you do about your cirrhosis?...........................19

When to go to the emergency room...............................23

What you and your provider should do to take 

good care of your liver.....................................................24 

Definition of commonly used terms in cirrhosis.............26

Resources for more information about cirrhosis.............30
 HCRC VA Hepatitis C Resource Centers
 Cirrhosis: A Patient’s Guide

Contributors

VA National Hepatitis C Program of the Public Health 

Strategic Health Care Group: Ronald O. Valdiserri, MD, 

MPH (Chief Consultant); Jane Burgess, ACRN, MS 

(Deputy Chief Consultant); and David B. Ross, MD, 

PhD (Director, Clinical Public Health Programs); and 

VA Hepatitis C Resource Centers: Guadalupe GarciaTsao, MD; Carol Eggers, MSN, APRN; Sahar Ghassemi, 

MD; Jason Dominitz, MD, MHS; Alex Monto, MD; 

Janet Durfee, MSN, APRN; and Eric Dieperink, MD. 

Carol Eggers and Guadalupe Garcia-Tsao are the lead 

authors of this document.
 HCRC VA Hepatitis C Resource Centers
 Cirrhosis: A Patient’s Guide

Introduction: 

What is this handbook for?

FACTS: This handbook explains basic facts about the 

liver and a disease of the liver called cirrhosis (pronounced 

“sir-o-sis”). It can help you understand the causes and 

treatments of cirrhosis. 

TOOL: You can use this handbook to help you talk to 

your provider about how to take better care of your damaged liver.

SUPPORT: You can use this handbook to feel more in 

control of your disease. Your family members and friends 

may read it to understand the challenges you face and to 

learn how they can help you.

ANSWERS: This handbook will answer your questions 

about common complications of cirrhosis and what can be 

done about them. 

EMERGENCIES: This handbook gives you important 

information about the most serious emergencies in cirrhosis. 

It provides practical tips on how to keep your liver as healthy 

as possible, including things to do and things to avoid.

TREATMENT TRACKING: This handbook tells you 

what you should keep track of when you have cirrhosis, so 

you can actively participate in your health care. 

RESOURCES: A list of the medical terms used in this 

handbook appears at the end. You may hear these words 

in discussions with your health care provider or when you 

read about cirrhosis in books, articles, or on the Internet. 

A list of information sources you can trust is also included.
 HCRC VA Hepatitis C Resource Centers

What does the liver do?

The liver is one of the largest organs in your body. It has 

many important jobs. It’s like a factory that makes vital 

substances (such as albumin and factors that help with blood 

clotting). It cleanses the body of toxins (like alcohol) 

and bacteria. It produces bile that helps digest food. The 

healthy liver also gathers and stores important substances 

for your body to use later, such as sugar and vitamins.

The liver is able to perform these tasks because millions of cells work as a team around the clock. Everything 

that enters the body through the mouth is digested in 

the stomach and intestines. These raw materials then 

enter the liver “factory” through the bloodstream and the 

worker liver cells break them down, purify them, make 

useful products, and get rid of harmful products.

Normal liver
 Cirrhosis: A Patient’s Guide

What is cirrhosis?

When something attacks and damages the liver, liver 

cells are killed and scar tissue is formed. This scarring 

process is called fibrosis (pronounced “fi-bro-sis”), and 

it happens little by little over many years. When the 

whole liver is scarred, it shrinks and gets hard. This 

is called cirrhosis, and usually this damage cannot 

be undone.

Any illness that affects the liver over a long period 

of time may lead to fibrosis and, eventually, cirrhosis. 

Heavy drinking and viruses (like hepatitis C or hepatitis 

B) are common causes of cirrhosis. However, there 

are other causes as well. Cirrhosis may be caused by a 

Normal liver

Cirrhotic liver
10 HCRC VA Hepatitis C Resource Centers

buildup of fat in the liver of people who are overweight 

or have diabetes. Some people inherit genes for certain 

conditions that cause liver disease, such as genes that 

will cause iron buildup in the liver. In other diseases, 

bile collects in the liver and causes damage that can 

lead to cirrhosis. Other causes include certain prescribed 

and over-the-counter medicines, environmental poisons, and autoimmune hepatitis, a condition in which 

a person’s own immune system attacks the liver as if it 

were a foreign body.

What happens when you

have cirrhosis?

Because the liver becomes lumpy and stiff in cirrhosis, 

blood cannot flow through it easily, so pressure builds 

up in the vein that brings blood to the liver. This vein 

is called the portal vein. When pressure is high in the 

portal vein, the condition is called portal hypertension. In order to relieve this pressure, the blood passes 

through other veins. Some of these veins, called 

varices, can be found in the pipe that carries food from 

your mouth to your stomach (the esophagus) or in your 

stomach itself. 

When you have cirrhosis, the high pressure in 

the portal vein backs up into another organ called 

the spleen, which gets big and destroys more platelets 

than usual. Platelets are blood particles that help with 

blood clotting.
11 Cirrhosis: A Patient’s Guide

When you have cirrhosis, entrance of blood to the 

liver is blocked and substances such as ammonia that 

would normally be cleaned by the liver, escape into the 

general circulation. 

Aside from the 

problems with liver 

blood flow, when 

cirrhosis is advanced 

there aren’t enough 

healthy worker cells 

to get all the work 

done, so these cells 

cannot make the 

good substances such 

as albumin and clotting factors that the 

liver normally makes. 

ROAD OUT

Varices

Liver Spleen

Stomach

Portal Vein
12 HCRC VA Hepatitis C Resource Centers

Liver cancer, called hepatocellular carcinoma (HCC) 

can also occur in cirrhosis when some of the sick liver 

cells start to multiply out of control.

What are the symptoms

of cirrhosis?

At first, you may have no symptoms at all (this is called 

compensated cirrhosis). In fact, a person may live many 

years with cirrhosis without being aware that his or her 

liver is scarred. This is because the pressure in the portal 

vein is not yet too high and there are still enough healthy 

liver cells to keep up with the body’s needs. 

But if nothing is done about the cause of cirrhosis (if 

you continue to drink, for example) or if your hepatitis 

is not treated, the pressure in the portal vein gets higher 

and the few remaining worker cells get overwhelmed. 

Then you may notice symptoms like low energy, 

poor appetite, weight loss, or loss of muscle mass. You can 

also develop the following serious problems: (1) internal 

bleeding from large blood vessels in the esophagus, called 

bleeding varices; (2) a buildup of fluid in the belly, called 

ascites (pronounced “a-sigh-tees”); (3) confusion from 

the buildup of toxins in the blood, called encephalopathy

(pronounced “en-sef-a-lop-a-thee”); or (4) yellowing of the 

eyes and skin, called jaundice.

As mentioned earlier, another serious complication of cirrhosis is liver cancer, which may occur in the 

compensated or decompensated stage. There may be no 

signs of liver cancer until the cancer has grown very large 

and causes pain.
13 Cirrhosis: A Patient’s Guide

What is decompensated

cirrhosis?

If you experience any of the serious problems described 

below, your disease has progressed from compensated cirrhosis to decompensated cirrhosis. You are then at risk of 

dying from life-threatening complications of liver disease, 

unless your sick liver can be replaced with a healthy liver 

(liver transplant). 

1. Bleeding varices (internal bleeding)

Large blood vessels (varices) in the food tube get bigger 

and bigger over time and can burst open. When this happens, you may vomit blood or notice your stool is black 

and tarry. If either of these things happens, you should go 

to the emergency room immediately to get help and stop 

the bleeding. 
14 HCRC VA Hepatitis C Resource Centers

The risk of bleeding from varices can be reduced by 

taking special blood pressure medicines (called betablockers) or by a special procedure in which tiny rubber 

bands are tied around the varices.

2. Ascites (fluid in the belly)

Another problem caused by high pressure in the veins of 

the liver is ascites. Fluid leaks out into the belly and it 

begins to fill it up. This can make the abdomen enlarge 

like a balloon filled with water. The legs can get swollen too. This can be very uncomfortable. Eating can 

be a problem because there is less room for food. Even 

breathing can be a problem, especially when you are lying 

down. But the most dangerous problem associated with 

ascites is infection, which can be 

life-threatening. 

Ascites may go away with a 

low-salt diet, and with diuretics

(water pills) ordered by your 

If you vomit blood or your stool turns black and tarry, you 

should go to the emergency room immediately. These are 

signs that varices may have begun to bleed, and this can be 

life-threatening.

If you have ascites and you suddenly get a fever or new belly pain, 

you should go to the emergency 

room immediately. These could be 

signs of a serious infection that can 

be life-threatening. 
15 Cirrhosis: A Patient’s Guide

provider. But sometimes a provider must actually drain 

the fluid from the belly using a special kind of needle. 

3. Encephalopathy (confusion)

A liver that is working 

poorly may not be able to 

get rid of toxic substances 

like ammonia (which 

comes from the intestines), 

and it may allow these 

substances to go into the 

brain and cause confusion.

Besides confusion, 

toxins in the brain cause 

changes in your sleep, 

your mood, your concentration, and your memory. If 

it gets really bad, these toxins can even cause a coma. 

These changes are all symptoms of hepatic encephalopathy. If you have encephalopathy, you may have problems 

driving, writing, calculating, 

and performing other activities of daily living. Signs of 

encephalopathy are trembling 

and hand “flapping”.

Encephalopathy may occur 

when you have an infection or when you have internal 

bleeding, and it may also occur if you are constipated or 

take too many water pills or take tranquilizers or sleeping 

pills. Your doctor might recommend lactulose. Lactulose 
16 HCRC VA Hepatitis C Resource Centers

is a syrup that makes your bowels move more often (up to 

two or three times a day) and helps get rid of ammonia.

4. Jaundice (yellowing of the eyes and skin)

A liver that is working poorly cannot get rid of bilirubin, 

a substance that produces a yellowing of the eyes and skin 

called jaundice. Too much alcohol and some medicines 

can also lead to jaundice.

How do you know if you

have cirrhosis?

Often, you cannot know whether you have cirrhosis 

until the disease is advanced. Only your health care 

provider can tell you if you have cirrhosis. 

If you are not acting like yourself, if you are confused, or if 

you are very sleepy, you should be taken to the emergency 

room immediately. These symptoms could be a sign of a 

serious medical problem. You should not drive when you 

have these symptoms.

If you suddenly develop jaundice, you should go to the 

emergency room immediately. 
17 Cirrhosis: A Patient’s Guide

There are many signs of cirrhosis that your provider 

may find. You may have red palms or small spider-like 

veins on your face or your body. You may have developed 

fluid in your abdomen. 

Your provider may do some blood tests that point to 

cirrhosis. Other tests can also give your provider a good idea 

of whether you have cirrhosis, such as an ultrasound, a CAT 

scan, an MRI, or a liver-spleen scan. 

Sometimes, you may need a liver biopsy. A liver 

biopsy shows how much scarring your liver has and will 

help your health care provider figure out what is causing 

the damage and how best to treat it.

What will your health care

provider do about cirrhosis?

People with cirrhosis need to see a health care provider 

from time to time. If you have compensated cirrhosis, 

these visits may be scheduled every year or even as 

often as every 3 to 6 months. These visits will let your 

provider watch for the development of complications. 

The provider can order the screening tests that can catch 

these complications early. Then they can be treated or 

even delayed. 

If you have decompensated cirrhosis, you may need 

to see your provider more often so that the complications 

that have developed already can be managed well. 

People with cirrhosis have to have an upper endoscopy (pronounced “en-dahs-cup-ee”) from time to time. 

This is a test in which you swallow a thin tube with a 

camera so that your provider can look for varices in the 
18 HCRC VA Hepatitis C Resource Centers

esophagus (food tube) and the stomach. If you have no 

varices, the endoscopy will be repeated every few years to 

see whether they show up. If you have large varices, you 

will get treatment to reduce the chance of bleeding.

You also will have a blood test and an ultrasound (or 

sometimes a CAT scan or an MRI) to look for signs of 

liver cancer and to check for ascites. It is important for 

your health care provider to look for cancer on a regular 

basis. If the cancer is caught early, there are often ways to 

treat it. If fluid (ascites) is found in your belly, medications 
19 Cirrhosis: A Patient’s Guide

(for example, water pills) and changes in your diet (like a 

low-salt diet) may help control this fluid. If these methods 

stop working, you can have a procedure called paracentesis

(pronounced “para-sen-tee-sis”). This procedure is used 

when your belly gets large and hard, which may happen 

every so often. You will go to a special procedures department where a trained provider will empty your belly of 

fluid using a special needle.

If you have developed decompensated cirrhosis, your 

provider may discuss the need for you to be considered for 

a liver transplant. You will want a health care provider 

who really knows you and can help you to decide if a 

transplant is right for you. Your provider will help you 

find out if your body can tolerate this operation, and, if 

it can, help you and your loved ones get ready for the 

transplant procedure.

What can you do about

your cirrhosis?

The most important thing you can do is to stop harming 

your liver and stick to the treatment prescribed by your 

provider. The following checklists are guides to taking 

care of your liver and keeping you well.

Put a check in the boxes next to the statements that 

show what you have done or are going to do to take 

care of your liver.

q I am not drinking alcohol or using street drugs.

q	 I always take the medications that my provider 

has ordered for me. I know their names and what 

each medication is for.
20 HCRC VA Hepatitis C Resource Centers

q	 I keep all of my medical 

appointments.

q	 I tell my provider if I am taking over-the-counter or herbal 

medications.

q	 I have been tested to see whether 

I need to get the hepatitis A and 

B vaccines (hepatitis A and B are 

viruses that attack the liver).

q	 I have received the pneumonia vaccine and I get 

my annual flu shot (people with cirrhosis are more 

likely to get infections).

q	 I eat a well-balanced diet that is low in fat and 

includes enough protein.

q	 I keep a healthy weight.

q	 I make sure to have a balance of work, rest, and 

exercise in my life.

q	 I cope well with stress (or I ask for guidance when 

I can’t cope).

q	 I tell my health care provider if I am depressed.

q	 I have never smoked cigarettes, I have quit smoking, or I have discussed quitting with my health 

care provider.

q	 I have asked my health care provider whether I 

need a liver transplant.
21 Cirrhosis: A Patient’s Guide

Put a check in the boxes next to the actions you are 

careful about.

q I know what my medications are and when I have 

to take them.

q I don’t take pain pills like ibuprofen (Motrin®, 

Advil®) or Naprosyn (Aleve®), especially if I 

have ascites.

q I don’t take too many Tylenol®

(acetaminophen) pills, and I never 

take Tylenol with alcohol. I read 

the labels and know the contents 

of all my medicines.

q I cut down on salt (sodium), read 

food labels, and avoid canned 

or prepared foods, especially if I 

have ascites.

q I avoid sleeping pills or tranquilizers.

q If my provider tells me to take lactulose, I take 

enough to move my bowels two or three times a day.

q I never let myself get constipated. If it happens, I 

tell my health care provider.
22 HCRC VA Hepatitis C Resource Centers

Stop and think! Put a check in the boxes next to the 

things you always do when you see your health care 

provider.

q I always bring a written list of my medicines and 

their doses.

q I tell my health care provider if I have pain in my 

belly.

q I tell my health care provider if I have fevers or 

chills.

q I tell my health care provider if I have black or 

tarry stool.

q I keep track of my weight and tell my health 

care provider if I am getting too heavy or too 

skinny.

q I mention if my belly seems 

bigger or my ankles are swollen.

q I tell my health care provider if 

I am sleeping during the day, if I 

am confused, or if I can’t focus or 

drive.

q I tell my health care provider if 

I’m constipated.
23 Cirrhosis: A Patient’s Guide

When to go to the

emergency room

Use the following guidelines to determine if you need to 

go to the emergency room.

DANGER

GO TO THE EMERGENCY ROOM!

(or call 911, say you have cirrhosis, and tell them 

what’s happening)

BLEEDING

My stools are black and tarry.

I’m vomiting blood.

CONFUSION

My head is cloudy.

I’m so confused and sleepy I can’t do anything.

FEVER

I have a fever and I can’t stop shaking.

JAUNDICE

My eyes are suddenly turning yellow.
24 HCRC VA Hepatitis C Resource Centers

What you and your provider

should do to take good

care of your liver

You and your provider can do the following things to keep 

your liver as healthy as possible for as long as possible. 

(Take this list with you to discuss with your provider.)

• Schedule liver clinic visits every 6 months; more 

often if you have decompensated cirrhosis.

• Have blood tests (to see how well the liver is 

working and to check for liver cancer) and an 

ultrasound (or CT or MRI) every 6 to 12 months.

• Have an endoscopy 

to screen for varices 

(repeated every few 

years if you have no 

varices or only small 

ones).

• Take medicines called 

beta-blockers when 

varices are large, to 

reduce the chance of 

bleeding.

• Take medicines called diuretics (spironolactone 

alone or with furosemide) to decrease ascites, and 

have regular blood tests to check for kidney health.

• Talk about how much alcohol you are drinking 

at every clinic visit.

• Go over your medicine list at every clinic visit.

Liver clinic visits every six months; more often 

in decompensated cirrhosis

Blood tests and ultrasound (or CT or MRI) 

every six to twelve months

Endoscopy to screen for varices (repeated every 

few years if you have no varices or only small 

ones)

Take medicines called beta-blockers when 

varices are large to prevent them from 

bleeding

Take medicines called diuretics 

(spironolactone alone or with furosemide) to 

decrease ascites, with regular blood tests to 

check for kidney health

Talk about how much alcohol you are 

drinking at every clinic visit

Go over your medicine list at every clinic visit

Talk about whether and when a liver 

transplant workup should be started for you

Discuss and update your Child-Pugh-Turcotte 

(CPT) score and your MELD score at each visit

For My Liver
25 Cirrhosis: A Patient’s Guide

• Talk about whether and when a liver transplant 

workup should be started for you.

• Discuss and update your Child-Pugh score (also 

known as CTP score) and your MELD score at 

each clinic visit. These scores are ratings that 

tell how sick your liver is and how urgently you 

need a transplant. They are explained in the list 

of terms.
26 HCRC VA Hepatitis C Resource Centers

Definition of commonly used

terms in cirrhosis

These are the medical terms (in alphabetical order) that 

you may read in this handbook, hear in discussions with 

your provider, or read in articles about cirrhosis on the 

Internet or in printed materials.

AFP (alpha-fetoprotein): A tumor blood test. High 

levels of AFP may be a sign of liver cancer. 

Albumin: Important protein made by the liver. Too little of 

it in the blood is a sign that the liver is not working well.

Ammonia: A by-product of the digestion of protein in 

the gut that is toxic if not filtered by the liver.

Ascites: Fluid in the belly.

Asterixis: Flapping movement of the hands that happens 

when the brain is affected by toxins (like ammonia) that 

are not being removed by the sick liver.

Beta-blockers: Medicines (like propranolol and nadolol) 

that lower the pressure in the portal vein and reduce the 

chance of bleeding from varices.

Bilirubin: By-product of the body that is removed by the 

liver. A high level in the blood causes jaundice and is a 

sign that the liver is not working well.

Child-Pugh (or CTP) score: A score that indicates 

how sick the liver is. Based on this score, there are three 

Child-Pugh stages: A (when the liver is still working very 

well); B (when the liver is working so-so), and C (when 
27 Cirrhosis: A Patient’s Guide

the liver is working poorly). If you are Child-Pugh B or 

C, you should be considered for a liver transplant.

Cirrhosis: Scarring of the whole liver that makes it 

shrunken and hard. Cirrhosis is the result of something (like 

alcohol or a virus) that damages the liver for a long time.

Creatinine: Blood test that measures how well your 

kidneys are working. It can be high when you are taking 

a dose of diuretics (water pills) that is too high or when 

your liver is very, very sick.

CT (or CAT) scan: A type of X-ray that takes pictures 

of your liver and can be used to look for liver cancer and 

other problems such as ascites.

Diuretics: Water pills such as spironolactone (Aldactone®) and furosemide (Lasix®) that are used to help the 

body get rid of ascites and swelling of the legs.

Encephalopathy: Changes in brain function that happen 

when toxic substances (like ammonia) are not filtered by 

the liver.

Endoscopy: A test of your esophagus and stomach in 

which you swallow a thin tube with a camera. It is 

used to look for varices.

Esophagus: Tube that carries food from your mouth to 

your stomach.

Hemoglobin and hematocrit: These blood tests will be 

very low if you have internal bleeding.

INR (also called prothrombin time): Test that checks 

how fast your blood clots. When your liver is not working 

well, your blood takes longer to clot and this test result 

will be high.
28 HCRC VA Hepatitis C Resource Centers

Jaundice: When your eyes and skin turn yellow. It is 

a sign that the liver is not working well. You can also 

become jaundiced if your bile ducts are blocked.

MELD score: A score that is used to rank the urgency for 

liver transplant. The worse your liver works, the higher 

your MELD score and the higher your position on the 

transplant list. 

MRI: A type of test that takes pictures of your liver and 

can be used to look for cancers or other problems.

Platelets: Particles in the blood that help the blood to 

clot. The platelet count is low in cirrhosis, and this may be 

the earliest sign of cirrhosis.

Portal hypertension: Increased pressure in the vein that 

takes blood to the liver. This is the main consequence 

of having cirrhosis.

Portal vein: Vein that takes blood from the intestines 

to the liver.

Prothrombin time (also called INR): Test that measures 

how fast your blood clots. When your liver is not working 

well, your blood takes longer to clot and this test result 

will be high.

Sodium and potassium: Electrolytes (pronounced 

“ee-lek-tro-lights”) that must be checked often when 

your health care provider prescribes water pills. 

Spider angiomas (pronounced “an-gee-o-mas”): Tiny 

veins that look like little red spiders on your face, 

chest, and arms. They are signs of cirrhosis.
29 Cirrhosis: A Patient’s Guide

Transplant of the liver: Major surgery by which a 

diseased liver is replaced with a healthy liver.

Ultrasound: A type of test that uses sound waves to 

take pictures of your liver. It is used to look for tumors 

and other problems.

Varices (esophageal, pronounced “ee-sahf-a-gee-ul”): 

Enlarged veins in the esophagus that can burst open and 

lead to vomiting blood or having black stool. 
30 HCRC VA Hepatitis C Resource Centers

Resources for more information

about cirrhosis

Here are some information sources you can trust if you 

want to know more about liver disease and its treatment:

• http://hepatitis.va.gov/: The VA Web site is 

an excellent source of information about liver 

disease in general and cirrhosis in particular. 

• http://www.myhealth.va.gov/: My Healthe-Vet is the gateway to veterans’ health benefits 

and services. It provides access to trusted health 

information and links to 

Federal and VA benefits 

and resources, including 

links to the hepatitis 

Web site.

• http://www.liverfoundation.org/: The 

American Liver Foundation’s own site. 

• Hepatitis and Liver Disease: What You Need 

to Know. A book written by Melissa Palmer, 

MD, for readers without a medical background, 

is available at no cost from the American Liver 

Foundation (http://www.liverfoundation.org

or at 1-800-465-4837). 

• 1-800-GO-LIVER (1-800-465-4837): To talk 

with someone in person, you can call the American Liver Foundation. 



www.hepatitis.va.gov

Publication date: 

March 2007