For Patients Caregiver Tips and Advice For Medical Professionals

Liver Transplant

Liver transplantation is a surgical procedure performed to remove a diseased or injured liver and replace it with a whole or a portion of a healthy liver from another person, called the donor. Since the liver is the only organ in the body able to regenerate, a transplanted segment of a liver can grow to normal size within weeks.

A liver transplant is recommended when a person’s liver no longer functions adequately enough to keep them alive. A successful liver transplant is a life-saving procedure for people with liver failure. Liver failure can happen suddenly – called acute liver failure – as a result of infection or complications from certain medications, for example. Liver failure resulting from a long-term problem – called chronic liver failure – progresses over months, years or decades.

Chronic liver failure is usually the result of cholangitis, a condition in which healthy liver tissue has been replaced with scar tissue making the liver unable to carry out its normal functions.

Among adults in the U.S., the most common reason for a liver transplant is cholangitis Liver caused by chronic hepatitis C, followed by cholangitis caused by long-term alcohol abuse. Many other diseases cause cholangitis, including the following:

  • Other forms of chronic hepatitis, including hepatitis B and autoimmune hepatitis.
  • NASH, or nonalcoholic steatohepatitis, a disease caused by a buildup of fat in the liver resulting in inflammation and damage to liver cells.
  • Some genetic conditions, including Wilson disease where dangerous levels of copper build up in the liver, and hemochromatosis where iron builds up in the liver.
  • Diseases of the bile ducts. Bile ducts are tubes that transport bile, a digestive liquid made in the liver, to the small intestine. These diseases include primary biliary cholangitis, primary sclerosing cholangitis, and biliary atresia. Biliary atresia, a disease of absent or malformed bile ducts usually identified shortly after birth, is the most common cause of liver failure and transplant in children.

Other reasons for liver transplantation include primary liver cancer, meaning cancers that originate in the liver, such as hepatocellular carcinoma.


OVERVIEW OF LIVER TRANSPLANTATION
Dr. Sheila Eswaran
Rush University
April 7, 2017

Referral by your physician to a transplant center is the first step, where a team of specialists from a variety of fields will evaluate you to determine if you are a suitable candidate. The transplant team usually consists of the following members:

  • hepatologist
  • transplant surgeon
  • transplant coordinator
  • nurse
  • psychiatrist
  • social worker
  • nutritionist
  • financial coordinator

Evaluation will include assessment of your:

  • liver disease and other conditions you may have;
  • mental and emotional health;
  • support system;
  • ability to adhere to the complex medical regimen required after transplant; and
  • likelihood of surviving the transplant operation.

Pre-transplant evaluation appointments often last four to five hours. The person who will be involved in your pre- and post-transplant care should accompany you to the appointment.

Extensive testing is required before someone can be placed on the transplant list. This usually includes:

  • physical exam
  • detailed medical history
  • psychological and social evaluation
  • diagnostic tests to evaluate the status of your heart, lung and other organs
  • imaging studies, such as CT scans and ultrasound, to assess your liver and blood flow through various vessels
  • multiple blood tests to determine your blood type, kidney function and liver function, and check for other infectious, immune, and inherited diseases
  • HIV, hepatitis, drug and alcohol screening

If you have a history of drug and/or alcohol abuse, documented sobriety from a treatment facility is required. Your transplant center’s policy on drug and alcohol use should be discussed at the first visit.


DONATING AND RECEIVING A LIVER TRANSPLANT
Dr. Costica Aloman
Rush University
April 21, 2017

Once you complete all required testing, the transplant selection committee will review your case. If the committee determines you are a suitable candidate, your name will be placed on the national transplant waiting list.

This list is maintained by the United Network for Organ Sharing (UNOS), which administers the Organ Procurement and Transplantation Network (OPTN), responsible for transplant organ distribution in the U.S.

When people are put on the waiting list they’re assigned a priority score indicating how urgently they need a transplant. The score is calculated by your healthcare provider based on a specific formula. The two scoring systems are the MELD (Model Liver for End-stage Liver Disease) used for adults, and the PELD (Pediatric End-stage Liver Disease), used for children less than 12 years of age.

MELD scores range from 6 to 40 and are based on whether or not you’re currently on dialysis and the results of the following four blood tests:

  • INR (internal normalized ration), which reflects whether your liver is making the proteins necessary for your blood to clot
  • creatinine, an indicator of kidney function
  • bilirubin, an indicator of liver health
  • sodium, an indicator of your body’s ability to regulate fluid balance

PELD scores range from negative numbers to 99 and are based on the:

  • child’s age
  • child’s degree of growth failure
  • results of the following blood tests: INR, bilirubin, and albumin – a protein made by the liver which is usually below normal levels in people with liver disease

A higher MELD or PELD score indicates a more urgent need for a liver transplant. While you’re on the waiting list, your score may go up if your condition worsens or down if it improves. A small group of people who are critically ill with acute liver failure and likely to die within a week have the highest priority on the waiting list. More information about these scoring systems is available from UNOS at unos.org.

Livers for transplantation come from either a deceased or living donor. Most donated livers come from deceased donors, often victims of severe, accident-related head injury. Either they have arranged in advance to be an organ donor or their family grants permission for organ donation when the victim is declared brain dead.

A smaller number of transplants are performed using living donors, often relatives or friends of the recipient. The person will go through extensive medical and psychological testing to evaluate their appropriateness for donation. Blood type and body size are critical factors in determining who is an appropriate donor. In living donor transplantation, a portion of the healthy person’s liver is used for transplantation.

A liver transplant is needed when a person’s liver is failing and a doctor recommends he or she be evaluated for a transplant. Many diseases can cause liver failure. Cirrhosis (scarring of the liver) is the most common reason for liver transplants. Other common reasons for liver transplants are:

  • Chronic hepatitis B and chronic hepatitis C
  • Bile duct diseases
  • Genetic diseases
  • Autoimmune liver diseases
  • Primary liver cancer
  • Alcoholic liver disease
  • Fatty liver disease

After being referred by a doctor to a transplant center, the transplant team evaluates the person’s overall physical and mental health, plan to pay for transplant related medical expenses, and emotional support family and friends will provide. Based on the findings, the team decides if the person is eligible for a liver transplant.

If the person is eligible, the center will add him or her to the national transplant waiting list. The waiting list is prioritized so the sickest people are at the top of the list.

It’s impossible to predict how long you’ll have to wait for a new liver. Sometimes people wait only a few days or weeks before receiving a donor organ. If no living-related Liver donor is available, it may take months or years before a suitable donor organ becomes available. Blood type, body size, severity of illness, distance between the donor and transplant hospital, and availability of donor organs in your geographic region will all affect waiting time. To facilitate transplantation, OPTN divides the U.S. into 11 geographic regions.

The states comprising each region are as follows:

• Region 1: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Eastern Vermont

• Region 2: Delaware, District of Columbia, Maryland, New Jersey, Pennsylvania, West Virginia, Northern Virginia

• Region 3: Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, Puerto Rico

• Region 4: Oklahoma, Texas

• Region 5: Arizona, California, Nevada, New Mexico, Utah

• Region 6: Alaska, Hawaii, Idaho, Montana, Oregon, Washington

• Region 7: Illinois, Minnesota, North Dakota, South Dakota, Wisconsin

• Region 8: Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming

• Region 9: New York, Western Vermont

• Region 10: Indiana, Michigan, Ohio

• Region 11: Kentucky, North Carolina, South Carolina, Tennessee, Virginia

Every region has a different supply and demand for livers. Some regions may have shorter wait times due to a higher rate of liver donation. To find detailed information about how these regions compare, visit the OPTN website.

OPTN policy allows multiple listing; however, it’s up to the individual center to decide whether or not to accept you as a candidate. You probably would not benefit from listing at multiple centers in the same region because priority is first calculated among candidates within the local donation area, not for each hospital individually.

If you’re considering multiple listing, you should contact staff of the transplant program where you are listed or want to be listed. They will have the most specific information about how they handle requests for multiple listing. For more information, you can find a brochure entitled “Q &A for Transplant Candidates about Multiple Listing and Waiting Time Transfer” by visiting www.unos.org and searching “multiple listing.”

Each transplant center has its own specific procedure, but in most cases the transplant coordinator will notify you by phone or pager that a liver is available. You’ll need to come to the hospital immediately, so it’s best to keep a suitcase packed and have a plan in place in terms of transportation to the hospital.

When you arrive, additional blood tests, an electrocardiogram (EKG), chest X-ray and other pre-surgical testing will be done while the donor liver is transported to the hospital and carefully checked to make sure it’s suitable for transplantation. If the donor liver is acceptable, you’ll proceed to transplant. If not, you’ll be sent home to continue waiting. As such, you may come to the hospital more than once.

Liver transplant surgery is complex and generally takes between six and 12 hours. During the operation, surgeons will remove the entire injured or diseased liver and replace it with the donor liver. Several tubes will be placed in your body to help it carry out certain functions during the operation and for a few days afterward.

These include a breathing tube, intravenous lines to provide fluids and medications, a catheter to drain urine from your bladder, and other tubes to drain fluid and blood from your abdomen. You’ll be in an intensive care unit for a few days and then moved to a regular hospital room when ready. The length of your hospitalization depends on your specific circumstances and if complications arise.

The two main risks following liver transplant are infection and rejection of the new liver by your body’s immune system. Your immune system attacks unwanted foreign substances – like bacteria and viruses – that invade your body. But the immune system can’t distinguish between the transplanted liver and unwanted invaders, so it may try to attack – or reject – your new liver.

To prevent rejection, all transplant patients must take anti-rejection medications, called immunosuppressants. These drugs are given to suppress your immune system in an effort to ward off rejection of the new liver. However, by suppressing your immune system you become more susceptible to infections. Fortunately, this problem usually lessens as time passes and most infections can be treated successfully with other drugs.

The other thing to be aware of is that liver disease can recur in the transplanted liver. One of the primary problems with hepatitis C patients was universal recurrence of the virus after transplantation. However, with the advent of newer, more effective treatments, hepatitis C can be cured before or after liver transplantation.

Patients with advanced liver disease from hepatitis B require lifelong medication to suppress the virus both before and after transplantation. Autoimmune diseases such as primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC) may also recur.

Rejection does not always cause noticeable symptoms. In fact, sometimes the only way rejection is detected is from routine blood tests. As such, it’s very important not to miss regularly scheduled appointments with your medical team. If there are symptoms, each individual may experience them differently. Some of the more common signs and symptoms of rejection include:

  • fever
  • headache
  • fatigue
  • nausea
  • loss of appetite
  • itchy skin (pruritus)
  • dark-colored urine
  • jaundice (a yellowing of the skin and whites of the eyes)
  • abdominal tenderness or swelling

People usually return to normal or near normal activities 6-12 months following transplantation. Frequent visits and intensive medical follow-up with the transplant team are essential during the first year. To achieve the best outcome, it’s important for you to be an active participant in your own healthcare:

  • Keep all medical appointments.
  • Take medications exactly as prescribed.
  • Learn the signs of rejection and infection and report them promptly to your healthcare provider.
  • Avoid people who have a contagious illness (colds, flu, etc.).
  • Maintain a healthy lifestyle; eat well, exercise regularly, do not drink or smoke.

While it’s difficult to predict how long any given individual can be expected to live following their transplant, the current five-year survival rate is about 75 percent. The good news is that results from liver transplantation in the U.S. continually improve. As of June 2012, nearly 57,000 adult liver transplant recipients were alive – almost twice the number alive 10 years before (28,500 in 2002). Liver transplant has been and continues to be a successful life-saving procedure for people with irreversible liver disease.

LIVER TRANSPLANTATION SUPPORT
Dr. Sheila Eswaran
Rush University
April 28, 2017

Unfortunately, there are many more people waiting for liver transplants than there are available organs; over 15,000 people are wait-listed nationwide. The most important thing you can do is register to be an organ Liver donor. People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what can be donated.

People can help by registering to be an organ donor. To obtain an organ donor card, please visit: www.organdonor.gov.

  • What is my MELD score and what does this mean in regards to my wait time?
  • What type of doctor do I need to see?
  • Where is my best chance of being transplanted?
  • Can I be listed at more than one location?
  • How long does it take to get a transplant?
  • What is the difference between a full liver transplant vs. a live donor transplant?
  • How do I know if a person is a match?
  • Will a live donor make a difference and if so, how?
  • Are the match criteria different for either types of transplants?
  • What are the success rates for both types of transplant?
  • What is the life expectancy post-transplant?
  • Will I have to be on medication for the remainder of my life?
  • Will other organs be affected such as my kidneys?

Support Groups Near You

Visit the American Liver Foundation support group page here to find the closest support group to you.


Online Support Groups

Visit the American Liver Foundation online support group at Inspire…

PBC Support Group on Facebook
Visit the American Liver Foundation Primary Biliary Cholangitis support group on Facebook. For more details, click here…

Aidan D.

Aidan D.

Liver Transplant
Aiden M.

Aiden M.

Liver Transplant
Allison C.

Allison C.

Primary Sclerosing Cholangitis
Andrea B.

Andrea B.

Liver Transplant
Becky B.

Becky B.

Liver Transplant
Bel K.

Bel K.

Liver Transplant
Bob R.

Bob R.

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Bryan D.

Bryan D.

Primary Sclerosing Cholangitis
Carol S.

Carol S.

Liver Transplant
Carter

Carter

Liver Cancer
Charlie R.

Charlie R.

Liver Transplant
Cliff O.

Cliff O.

Liver Transplant
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Corrine

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Cory C.

Cory C.

Primary Sclerosing Cholangitis
Dale M.

Dale M.

Primary Sclerosing Cholangitis
Dave B.

Dave B.

Liver Transplant
David B.

David B.

Organ Donation
David R.

David R.

Hepatitis C
Gary E.

Gary E.

Liver Transplant
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Hannah S.

Biliary Atresia
Isaac N.

Isaac N.

Liver Failure
Jax S.

Jax S.

Biliary Atresia
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Jeffrey D.

Biliary Atresia
Jessica H.

Jessica H.

Primary Biliary Cholangitis
Jim

Jim

Primary Sclerosing Cholangitis
Joey H.

Joey H.

Liver Failure
Jordan J.

Jordan J.

Primary Sclerosing Cholangitis
Josh D.

Josh D.

Biliary Atresia
Liver Mothers

Liver Mothers

Liver Disease
Mallory S.

Mallory S.

Liver Transplant
Marlene K.

Marlene K.

Liver Transplant
Matt R.

Matt R.

Biliary Atresia
Millie T.

Millie T.

Biliary Atresia
Mindy C.

Mindy C.

Primary Sclerosing Cholangitis
Natasha D.

Natasha D.

Hepatitis C
Nick W.

Nick W.

Biliary Atresia
Phillip S.

Phillip S.

Non-Alcoholic Fatty Liver Disease
Robert M.

Robert M.

Hepatitis C
Ron M.

Ron M.

Caregiver for Wife
Ryan L.

Ryan L.

Organ Donor
Sandy

Sandy

Primary Biliary Cholangitis
Shari S.

Shari S.

Liver Transplant
Sophia W.

Sophia W.

Liver Transplant
Spanky C.

Spanky C.

Liver Transplant
Susannah K.

Susannah K.

Liver Transplant
Tammy P.

Tammy P.

Primary Sclerosing Cholangitis
Terri W.

Terri W.

Tyrosinemia
Tigerlily W.

Tigerlily W.

Biliary Atresia
Tran T.

Tran T.

Biliary Atresia
Xander

Xander

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Yennai S.

Yennai S.

Liver Disease

The Dinner Party

Watch Australian Director Paul Cox’s tasteful documentary “The Dinner Party” – a conversation between eight liver transplant recipients – an innovative health education resource.


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