Facing a diagnosis of primary biliary cholangitis (PBC) can be overwhelming, and it may feel like your world has been turned upside down. While medications can slow down disease progression, they may not work for everyone with PBC. But there’s hope. Living with PBC is challenging, but understanding your treatment options — including the possibility of a liver transplant — can empower you to take control of your health and future.

This article will help you understand the criteria for a liver transplant if you have PBC. It covers the transplant process and what you can expect during recovery. It also discusses important considerations like survival rates, the possibility of PBC returning after a transplant, and how to manage your health with PBC in the long term.

Treatments for PBC Before a Liver Transplant

Primary biliary cholangitis — previously known as primary biliary cirrhosis — is a progressive disease with no known cure. It’s an autoimmune disease where the body’s immune system mistakenly attacks the small bile ducts in the liver. These bile ducts play an important role in helping the liver process and remove waste from the body. When they become damaged due to PBC, bile can build up in the liver, leading to inflammation and scarring (cirrhosis). Over time, this can cause significant liver damage. It may progress to end-stage liver disease or liver failure.

Before considering a liver transplant, your health care provider will try different PBC treatments to manage your condition and slow its progression. The goal is to protect your liver and delay the need for a transplant as long as possible. However, if treatment options aren’t effective, a liver transplant may be necessary.

Criteria for Liver Transplantation in People With PBC

A liver transplant is usually considered when other treatment options haven’t worked and PBC has caused severe liver damage. Here are some key factors that your doctor may consider when deciding if you need a liver transplant.

Severity of Liver Disease

Your doctor will start by assessing how much your liver is affected by PBC. This includes looking at symptoms such as:

• Jaundice (yellowing of the skin and eyes)
• Ascites (fluid buildup around the abdomen)
• Hepatic encephalopathy (confusion or changes in mental state due to toxin buildup in the blood)
• Varices bleeding (bleeding from large veins in the esophagus or stomach that can develop in end-stage liver disease)
• Fatigue and pruritus (itching)

Model for End-Stage Liver Disease Score

The Model for End-Stage Liver Disease (MELD) score is a calculation that helps determine how urgently you need a liver transplant. The score is based on several factors:

• Bilirubin levels (show how well your liver is clearing bile from your blood)
• Creatinine levels (reflect kidney function)
• International normalized ratio (shows how well your blood is clotting)
• Serum sodium levels (show how well your body is regulating fluids)

A MELD score ranges from 6 to 40. A higher MELD score reflects more severe liver disease and a greater need for a transplant. Usually, a MELD score of 15 or higher may qualify you for being listed for a liver transplant. However, your doctor may consider other factors as well.

Other Considerations for Liver Transplantation

In addition to your MELD score, your doctor will consider other factors when deciding whether you’re a good candidate for a liver transplant. These include your blood type, your body size relative to the donor’s, and if you live close enough to a donor. To find a match, you’ll need to be compatible with your donor in all three categories.

Unfortunately, there are a lot more people who need a liver transplant than there are available donor livers. If someone you know is willing to donate a portion of their liver to you, you can skip the liver transplant waiting list. However, this can only work if you have the same blood type and a similar body size.

The Liver Transplant Process

For people living with PBC, a liver transplant can be a lifesaving procedure. If your health care team thinks you’re a good candidate, they’ll go over all the details of the surgery with you. These include preoperative (before surgery) procedures, the transplantation process itself, and postoperative (after surgery) follow-up care.

Evaluation and Listing

If your doctor thinks you might need a liver transplant, the first step is a thorough evaluation. This involves several tests, including blood tests, imaging scans like MRI or ultrasound, and sometimes a liver biopsy.

Your health care team will also do other tests to make sure your heart and lungs are healthy enough to handle the surgery. If all the tests indicate you’re a good candidate, you’ll be placed on the transplant waiting list. How long you wait depends on your MELD score, blood type, and the availability of a matching donor liver.

Transplant Surgery

A liver transplant surgery is a major procedure — it typically takes between six and 12 hours. You’ll be put under general anesthesia. This means you’ll be asleep and won’t feel anything during the surgery.

Your surgeon will remove your liver while keeping the surrounding structures intact. Your new liver will come from either a deceased or living donor. It will be placed in your body and connected to your blood vessels and bile ducts. Your vital signs will be closely monitored during the surgery to make sure everything’s going smoothly.

After surgery, you’ll be moved to the intensive care unit (ICU) for close observation. The ICU team will monitor you for signs that your body is accepting the new liver. They will also keep a close eye on any potential complications.

Recovery and Follow-Up After a Liver Transplant

Recovering from a liver transplant is a gradual process that takes time and patience. Immediately after the procedure, you’ll likely spend one to two weeks in the hospital, depending on how quickly you recover. During this time, your health care team will monitor you closely to make sure your new liver is working properly and that there are no complications like infection or rejection.

Long-Term Outcomes and Management of PBC

Liver transplantation requires lifelong management to make sure your new, healthy liver continues to work as it should. Your health care team will work with you throughout your life to make sure everything is going smoothly.

Long-Term Health Management

After a liver transplant, you’ll need to take care of your new liver and overall health. This includes regular checkups with your hepatologist (liver specialist). These visits might include blood tests and imaging tests to make sure your new liver is working well.

You’ll also need to take medications every day for the rest of your life. This is so your body doesn’t reject your new liver. These drugs can have side effects, like making you more likely to get infections. Your health care team will work with you to help manage these risks.

Recurrence of PBC After a Liver Transplant

There is a chance that PBC can come back after a transplant, but it doesn’t usually happen. Studies show that PBC returns in about 20 percent to 35 percent of people who have received a liver transplant. However, if PBC does return, it’s usually slower to progress and can often be managed with medications.

Survival Rates

Survival rates describe the percentage of people who are still alive after a certain period of time after a procedure or diagnosis. The success rate of liver transplants for people with PBC is generally very good. The survival rates for people with PBC who have received a liver transplant are:

• 1-year survival rate — 94 percent
• 3-year survival rate — 91 percent
• 5-year survival rate — 86 percent

The decision to get a liver transplant involves careful consideration. However, the outcomes are generally positive, and most people benefit from significant improvements in quality of life. Understanding the process from evaluation to recovery will help you make informed decisions and manage your expectations. Your health care provider can help support you in making these decisions and achieving the best possible outcome for your health.

Talk With Others Who Understand

On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, more than 1,400 members come together to ask questions, give advice, and share their tips with others who understand life with primary biliary cholangitis.

Have you received a liver transplant for PBC? What was it like? Share your experiences in the comments below, or start a conversation by posting on your Activities page.