If you are a loved one who is also a caregiver for someone with cirrhosis of the liver, the task can be demanding and challenging. In addition to the obligations of day-to-day life, there are constant concerns about medication, nutrition, effects of cirrhosis (such as confusion as a result of hepatic encephalopathy), etc.
Caregiving can be a isolating experience; however, please don’t try to be “Superman” and do everything yourself. While I know the loved one who is ill is your top priority, please do not neglect your own health and nutrition. Seek out help from others. If there are friends or family members who can give you break, please utilize these resources. Take a few hours to recharge your batteries — read a book, see a movie, call a friend, go to lunch, take a nap — do something for yourself.
I would encourage you to research the available respite care in your area. Respite care is basically short term relief for someone who is caring for a loved one at home. One place to start is the Family Caregiver Alliance, which includes state-by-state information.
If you are a religious or spiritual person, your faith and spirituality can be a source of great strength during the trying times that can come when dealing with cirrhosis. A online resource for free religious, spiritual, and motivational information is A Woman’s Journey – www.awomansjourney.com.
When dealing with liver disease, a trip to the emergency room can be a common occurrence. Therefore, it is essential that one keep a complete, accurate, and up-to-date list of the liver patient’s prescription medications, as well as any over-the-counter medications, supplements, vitamins and herbals that the patient may take. Be sure to include the dosage information–number of milligrams (or other measure), amount taken, and number of times taken per day.
If the patient has taken medication that was discontinued because he or she had an adverse reaction, that information should be included, as well.
Keeping an up-to-date list of medications can ensure that emergency room medical staff has the information that they need to provide the best patient care.
This site contains a helpful personal medicine forms – http://www.ismp.org/Tools/personal_med_form/.
I recently become acquainted with a website from the United Kingdom that has many informative online publications regarding liver diseases. The site is The British Liver Trust - http://188.8.131.52/britishlivertrust.org.uk/home-2/order-publications/download-publications/
The publications include the following liver disease related topics:
If you have cirrhosis, at some point, a transplant may be necessary. The following is some basic information regarding liver transplants:
What is liver transplantation?
Liver transplantation is surgery to remove a diseased or injured liver and replace it with a healthy one from another person, called a donor. Many people have had liver transplants and now lead normal lives.
What are the reasons for needing a liver transplant?
In adults, the most common reason for needing a liver transplant is cirrhosis. Cirrhosis can be caused by many different types of diseases that destroy healthy liver cells and replace them with scar tissue.
Some causes of cirrhosis are
- long-term infection with the hepatitis C virus
- drinking too much alcohol over time
- autoimmune liver diseases
- long-term infection with the hepatitis B virus
- the buildup of fat in the liver
- hereditary liver diseases
Your body’s natural defense system, called the immune system, keeps you healthy by fighting against things that can make you sick, such as bacteria and viruses. Autoimmune liver diseases occur when your immune system doesn’t recognize the liver as a part of your body and attacks it. Hereditary diseases are passed from parents to children through genes.
In children, the most common reason for needing a liver transplant is biliary atresia. In biliary atresia, bile ducts are missing, damaged, or blocked. Bile ducts are tubes that carry bile from the liver to the gallbladder and small intestine. When bile ducts are blocked, bile backs up in the liver and causes cirrhosis.
Other reasons for needing a liver transplant include
- sudden liver failure, called acute liver failure, most often caused by taking too much acetaminophen (Tylenol)
- liver cancers that have not spread outside the live
How will I know whether I need a liver transplant?
Your doctor will decide whether you need to go to a liver transplant center to be evaluated by a liver transplant team. The team will include liver transplant surgeons; liver specialists, called hepatologists; nurses; social workers; and other health care professionals. The transplant team will examine you and run blood tests, x rays, and other tests to help decide whether you would benefit from a transplant.
The transplant team will also check to see if
- your heart, lungs, kidneys, and immune system are strong enough for surgery
- you are mentally and emotionally ready to have a transplant
- you have family members or friends who can care for you before and after the transplant
Even if you are approved for a transplant, you may choose not to have it. To help you decide, the transplant team will explain the
- patient selection process
- operation and recovery
- long-term demands of living with a liver transplant, such as taking medicines for the rest of your life
During your evaluation, and while waiting for a transplant, you should take care of your health. Your doctor will tell you what you can do to stay strong while you wait for a new liver.
Can anyone with liver problems get a transplant?
Each transplant center has rules about who can have a liver transplant. You may not be able to have a transplant if you have
- cancer outside the liver
- serious heart or lung disease
- an alcohol or drug abuse problem
- a severe infection
- trouble following your doctor’s instructions
- no support system
How long does it take to get a new liver?
If you need a transplant, your name will be placed on a national waiting list kept by the United Network for Organ Sharing (UNOS). Your blood type, body size, and how urgently you need a new liver all play a role in when you will receive a liver. Those with the most urgent need for a liver to prevent death are at the top of the list. Many people have to wait a long time to get a new liver. For information about the national waiting list, please contact the UNOS :
United Network for Organ Sharing
P.O. Box 2484
Richmond, VA 23218
Phone: 1–888–894–6361 or 804–782–4800
Where do the livers for transplants come from?
Most livers come from people who have just died. This type of donor is called a deceased donor. Sometimes a healthy living person will donate part of his or her liver to a patient, usually a family member. This type of donor is called a living donor. Both types of transplants usually have good results.
All donated livers and living donors are tested before transplant surgery. The testing makes sure the donor liver works as it should, matches your blood type, and is the right size, so it has the best chance of working in your body. Adults usually receive the entire liver from a deceased donor. Sometimes only a portion of a whole liver from a deceased donor is used to fit a smaller person. In some cases, a liver from a deceased donor is split into two parts. The smaller part may go to a child, and the larger part may go to an adult.
You should check your health insurance policy to be sure it covers a liver transplant and prescription medicines. You will need many prescription medicines after the surgery and for the rest of your life.
What happens in the hospital?
When a liver is available, you will need to get to the hospital quickly to be prepared for the surgery. If your new liver is from a living donor, both you and the donor will have surgery at the same time. If your new liver is from a deceased donor, your surgery will start when the new liver arrives at the hospital.
The surgery can take up to 12 hours. The surgeon will remove your liver and then replace it with the donated liver.
You will stay in the hospital about 1 to 2 weeks to be sure your new liver is working. You’ll take medicines to prevent infections and rejection of your new liver. Your doctor will check for bleeding, infections, and liver rejection. During this time, you will learn how to take care of yourself after you go home and about the medicines you’ll need to take to protect your new liver.
What is organ rejection?
Rejection occurs when your immune system attacks the new liver. After a transplant, it is common for your immune system to try to destroy the new liver.
How is organ rejection prevented?
To keep your body from rejecting the new liver, you will take anti-rejection medicines, also called immunosuppressive medicines. You will need to take anti-rejection medicines for the rest of your life.
Do anti-rejection medicines have any side effects?
Anti-rejection medicines can have many serious side effects. You can get infections more easily because these medicines weaken your immune system. Other possible side effects include
- weight gain
- high blood pressure
- high blood cholesterol
- brittle bones
- kidney damage
- skin cancer
Your doctor and the transplant team will watch for and treat any side effects.
What are the signs of organ rejection?
If your body rejects your new liver, you might feel tired, lose your appetite, or feel sick to your stomach. Other signs might include having
- a fever
- pain around the liver
- dark-colored urine
- light-colored stools
But rejection doesn’t always make you feel ill. Doctors will check your blood for signs of rejection. A liver biopsy is usually needed to tell whether your body is rejecting the new liver. For a biopsy, the doctor takes a small piece of the liver to view with a microscope.
What other problems can damage my new liver?
Recurrence of the disease that caused the need for a transplant can damage a new liver. For example, the hepatitis C virus may return and damage the new liver in a patient who had hepatitis C before the transplant.
Other possible problems include
- blockage of the blood vessels going into or out of the liver
- damage to the bile ducts
What if the liver transplant doesn’t work?
Liver transplants usually work. About 80 to 85 percent of transplanted livers are still working after 1 year. If the new liver does not work or if your body rejects it, your doctor and the transplant team will decide whether another transplant is possible.
How do I take care of my liver after I leave the hospital?
After you leave the hospital, you will see your doctor often to be sure your new liver is working well. You will have regular blood tests to check that your new liver is not being damaged by rejection, infections, or problems with blood vessels or bile ducts.
To help care for your liver, you will need to
- avoid people who are ill and report any illnesses you have to your doctor
- eat a healthy diet, exercise, not smoke cigarettes, and not drink alcohol
- take prescribed medicines as directed
- ask your doctor before taking any other medicines, including ones you can buy without a prescription
- follow your doctor’s instructions about how to take care of your new liver
- have blood tests and other tests as directed by your doctor
- use sunblock to prevent skin cancer and have cancer screening tests recommended by your doctor
Can I go back to my daily activities?
After a successful liver transplant, most people can go back to their normal daily activities, and many return to work. Getting your strength back may take months, though, especially if you were very sick before the transplant. Your doctor will let you know how long your recovery period will be. Social workers and support groups can help you adjust to life with a new liver.
Work. After recovery, most people are able to return to work. Your doctor will let you know when you can go back to work.
Diet. Most people can go back to eating as they did before the transplant. Some medicines prescribed after your transplant may cause you to gain weight, and others may cause diabetes or raise your cholesterol. Eating a balanced, low-fat diet can help you stay healthy.
Exercise. Most people can be physically active after a liver transplant.
Sex. Most people can have a normal sex life after a liver transplant. For women, avoiding pregnancy in the first year after a transplant is recommended. Talk with your transplant team about when it’s okay to have sex again or get pregnant after your transplant.
If you have any questions, check with your doctor.
Points to Remember
- Liver transplantation is surgery to remove a diseased or injured liver and replace it with a healthy one from another person, called a donor.
- If your liver stops working as it should, you may need a liver transplant.
- In adults, the most common reason for needing a liver transplant is cirrhosis. Cirrhosis can be caused by many different types of diseases that destroy healthy liver cells and replace them with scar tissue. Some causes of cirrhosis are long-term infection with the hepatitis C virus, drinking too much alcohol over time, and autoimmune and other liver diseases.
- In children, the most common reason for needing a liver transplant is biliary atresia. In biliary atresia, bile ducts in the liver are missing, damaged, or blocked. As a result, bile backs up in the liver and causes cirrhosis.
- Your doctor will decide whether you need to go to a liver transplant center to be evaluated by a liver transplant team. The transplant team will examine you and run blood tests, x rays, and other tests to help decide whether you would benefit from a transplant.
- People with the most urgent need for a new liver to prevent death are at the top of the national waiting list. Many people have to wait a long time to get a new liver.
- Most livers come from people who have just died. This type of donor is called a deceased donor. Some transplants involve living donors who donate part of their liver, usually to a family member.
- Liver transplant surgery can take up to 12 hours. You will stay in the hospital about 1 to 2 weeks after surgery.
- Problems after surgery may include bleeding, infections, and rejection of the new liver.
- Rejection occurs when your immune system attacks the new liver. After a transplant, it is common for your immune system to try to destroy the new liver.
- After a liver transplant, you must take anti-rejection medicines for the rest of your life to keep your body from rejecting your new liver.
- Liver transplants usually work. Most people are able to return to work and other normal activities after a transplant.
For More Information
National Liver Transplant Guide
This online booklet provides information regarding evaluation, transplantation, and post-transplant.
American Association for the Study of Liver Diseases
1001 North Fairfax, Suite 400
Alexandria, VA 22314
American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038–4810
Phone: 1–800–GO–LIVER (1–800–465–4837) or 212–668–1000
Hepatitis Foundation International
504 Blick Drive
Silver Spring, MD 20904
Phone: 1–800–891–0707 or 301–622–4200
Organ Procurement and Transplantation Network
United Network for Organ Sharing
P.O. Box 2484
Richmond, VA 23218
Phone: 1–888–894–6361 or 804–782–4800
My friend who had liver disease told me that he experienced constant itching (pruritus). We learned that itching is a common symptom for people with liver disease, and that it is a result of toxins building up in the bloodstream. He found some relief by using Gold Bond Medicated Anti-Itch Cream and Eucerin Skin Calming Daily Moisturizing Creme.
I have read that some people have found relief with the prescribed medications Rifampin and Naltrexone, although results were mixed.
The following are tips from HCV Advocate.org:
Avoid soap. Use a non-soap cleanser such as
Cetaphil or a similar substitute
Try rubbing, vibration, or applying pressure instead
of scratching. A good thing to “scratch” with is an
Drink plenty of water or other clear fluids to keep
your entire body hydrated
Apply moisturizer immediately after a shower or
bath – before drying off with a towel
Creams are more effective moisturizers than lotions
Apply moisturizer at least twice a day. Effective
moisturizers include Vaseline skin care products,
Aveeno, Eucerin, and Lubriderm
Use only non-perfumed, mild bath and personal
Avoid extremely hot showers and baths
Take an oatmeal bath to relieve itching and help
Try baking soda or unscented bath oils for bathing
Apply cold packs (wrapped in a towel) to the skin
Whenever possible, wear loose fitting clothes made
from natural fabrics that breathe
Protect your skin from the sun – wear sunscreen
Look after your lips – use lip balm with sunscreen
Get plenty of rest
Keep rooms ventilated and at a temperature of 60 to
Ascites is the term used for the build up of fluid in the space between the lining of the abdomen and abdominal organs (known as “the peritoneal cavity”).
Cirrhosis is one of the most common cause of ascites.
Ascites is routinely managed by monitoring one’s sodium intake and fluid intake, and taking medically-prescribed diuretics. My friend was prescribed the diuretics, spironolactone (Aldactone) and furosemide (Lasix). Carefully monitor the fluid intake. My friend ended up in the emergency room several times because he had taken in very little fluids, took the diuretics, and ended up being dehydrated.
Your doctor may also recommend paracentesis [usually a fairly quick outpatient procedure] to address ascites. Paracentesis is a procedure to remove fluid from the abdominal area. Usually, a thin needle is inserted into the abdomen and fluid is drained into bottles.
Xifaxan (rifaximin) is an antibotic that is sometimes prescribed as a treatment for people with cirrhosis who have issues with hepatic encephalopathy. My friend was prescribed Xifaxan, along with Lactulose. If you have issues with hepatic encephalopathy, Xifaxan may help. Your health care provider can provide additional information.
Salix Pharmaceuticals, which markets Xifaxan, has a program, The Hepatic Encephalopathy Living Program, or H.E.L.P., that offers support for the management of hepatic encephalopathy. That support includes an instant savings card [for eligible patients], as well as a patient hotline and educational materials. If you are an adult with a history of overt hepatic encephalopathy, you are eligible to enroll in H.E.L.P. Additionally, if you are caring for a person 18 years of age or older with hepatic encephalopathy, you may also enroll in the program. For more information, visit the H.E.L.P. website – http://www.xifaxan550.com/he-living-program or call 1-866-XIFAXAN (943-2926).
Xifaxan can be quite expensive. Even with insurance, we spent hundreds of dollars for each prescription.
If you have cirrhosis, the amount of protein you ingest is key. It can involve a delicate balancing act of trying to incorporate the right amount of protein into one’s diet, but not so much that there are physical consequences.
Protein is obviously a vital component of the body. However, a person with cirrhosis has problems processing protein. One of the livers many functions is filtering toxic byproducts from the body. Certain proteins are converted by the body into ammonia. A damaged liver may not be able to clean the blood of ammonia. Too much protein can raise ammonia levels and trigger hepatic encephalopathy. My friend frequently suffered from confusion and temporary loss of memory because of hepatic encephalopathy. Hepatic encephalopathy should be taken very seriously, as it may become a medical emergency.
Patients with cirrhosis are frequently told to limit the amount of meat they eat and try to get their protein from vegetables sources, for example beans and lentils, and from dairy products, such as eggs, milk, and yogurt. Be sure to consult your health care professionals regarding the best proteins to include in your diet and the amount you should eat.
It is not unusual for someone with cirrhosis to suffer loss of appetite. This can be particularly concerning at a time when nutrition is of the utmost importance.
After my friend, who had cirrhosis, began losing his appetite, getting him to eat became quite a struggle. I invested in a good, reasonably priced juicer and purchased a book re juicing. “The juice from raw fruits and vegetables has powerful healing and rejuvenating properties that can help people with all sorts of health problems” (Dr. Sandra Cabot – The Liver Doctor).
I had the greatest success getting him to ingest nutrients by juicing. My friend’s favorites were juice concoctions that contained carrots or beets. When choosing fruits and vegetables for juicing, try to buy organic. Buying organic food can help one avoid many pesticides and chemicals, and can help support liver health and function.
If you are preparing meals for someone with appetite issues, do not overwhelm them with large quantities of food. Try throughout the day to provide very small meals that include the foods they are willing to eat.
I would also suggest a visit to one the liver support message boards for practical eating suggestions from people who have liver disease and their loved ones. Visiting these boards is also helpful, because, in a world filled with people who are constantly dieting and trying not to eat, it can be difficult for people who have no experience with liver disease to understand dealing with lack of appetite.
What one eats is of the utmost importance when managing liver disease.
Diet and Nutrition
If you have cirrhosis, ask your health care provider for a referral to a registered dietitian, who can create a diet specific to your needs. Cirrhosis can lead to other problems:
Ascites (fluid buildup in the abdomen)
Hepatic encephalopathy (mental confusion)
Cirrhosis refers to the replacement of damaged liver cells by scar tissue. Too much scarring prevents blood flow through the liver. This causes even more damage and loss of liver function. Cirrhosis can hinder the body’s use of nutrients and can lead to malnutrition.
Many patients with cirrhosis tend to hold onto (or retain) water. This often is shown first by swelling in the ankles, particularly after walking. The swelling may move up the legs to the abdomen. Water buildup in the abdomen is called “ascites” (pronounced “ah-si-teez”).
Too much sodium (or salt) in the diet can make the situation worse, because sodium encourages the body to retain water. Your doctor will tell you if you need to limit sodium in your diet. Usually this means restricting sodium intake to about 2,000 mg a day or less.
If you need to restrict sodium, here are some tips that can help:
Avoid salty foods, salt in cooking, and salt at the table. Anything that tastes salty (such as tomato sauce, salsa, soy sauce, canned soups) probably has too much salt. Spice things up with lemon juice or herbs, instead of salt. Fresh foods usually are a better bet than processed foods.
Read food labels when shopping. Check the amount of sodium in the foods you are buying.
Avoid fast-food restaurants. Most fast foods are very high in sodium.
Go easy on meats, especially red meats, which are high in sodium. When possible, consider vegetarian (meat-free) alternatives.
A dietitian can inform you about other products, such as antacids, that also contain lots of sodium.
The more fluid you retain, the greater your need to avoid salt. Your doctor may prescribe diuretics (“water pills”) to help you urinate more. But all the water pills in the world won’t help if you eat salty foods, such as anchovy pizzas.
Calories and protein
People with cirrhosis may need more extra calories and protein. They may lose their appetite and experience nausea, vomiting, and severe weight loss. This can lead to shortage of the minerals calcium and magnesium (signs include muscle cramps, fatigue, weakness, nausea, and vomiting), or a shortage of zinc (signs include reduced ability to taste, changes in taste).
It can help to eat small, frequent meals (4 to 7 times a day), including an evening snack. Your doctor even may recommend high-nutritional supplement drinks, such as Ensure or Boost.
When the scarring from cirrhosis prevents blood from passing through the liver, pressure increases in the veins entering the liver. This is called portal hypertension. The body is forced to reroute the blood away from the liver and into the general blood circulation. This causes large blood vessels, called “varices,” to form.
Because the rerouted blood bypasses the liver, it contains high levels of amino acids, ammonia, and toxins that normally would have been handled by the liver. When these substances reach the brain, they can cause confusion and temporary loss of memory (a condition called “hepatic encephalopathy”).
Amino acids and ammonia come from protein in the diet. Some evidence shows that patients with cirrhosis do better when they get their protein from vegetables (such as beans, lentils, and tofu) and from dairy products (eggs, milk, yogurt) instead of from meats.
Doctors can prescribe a syrup called Lactulose to push food through the bowels more quickly. This way, less food is absorbed, the liver has less work to do, and fewer toxins make their way to the brain.
Source: US Dept. of Veterans Affairs