In primary biliary cholangitis (PBC), the small bile ducts in your liver get damaged over time. This can lead to serious liver problems, and some people with PBC may eventually need a liver transplant. If you have PBC, you may already be on the waiting list. If you’ve just been diagnosed with PBC, you may feel anxious about whether liver transplant surgery will be part of your future.

No matter where you are in your journey with PBC, it’s natural to have questions. This article explains how the liver transplant process works, what steps are involved, and how long each step might take.

Before a Liver Transplant

Before you can get a transplant, you need to be evaluated by a healthcare team and matched with an organ donor. This process can take time — perhaps weeks or months, depending on your situation.

Determining Your Eligibility

If your doctor recommends getting a liver transplant, you’ll first need to be evaluated at a transplant hospital. A healthcare team will perform tests and exams to check your overall health and decide if you’re eligible for an organ transplant. Liver transplant teams usually include many specialists, such as:

• Hepatologists (liver doctors)
• Transplant surgeons
• Social workers
• Case managers
• Transplant coordinators
• Psychiatrists
• Dietitians

The evaluation process may last a few weeks or continue for several months. If your condition is serious, the process may move faster. Eligibility requirements for organ transplants differ from hospital to hospital. If you don’t meet the criteria at one facility, you can ask to be evaluated at another.

Matching With a Deceased Donor

If you’re accepted as a transplant candidate, you’ll be placed on the national waiting list to receive a deceased donor liver (from someone who has died). If you have a living donor, you’ll skip the waiting list.

The United Network for Organ Sharing (UNOS) manages the national organ transplant waiting list. UNOS will let you know your name has been added. Your spot on the list depends on how urgently you need a transplant. This is determined by UNOS using a scoring system called the Model for End-Stage Liver Disease (MELD), which is based on your lab results.

Far more people require liver transplants than there are available organs. Some people get a match in less than a month, whereas others may wait more than five years, depending on their level of need. When a liver match becomes available, your transplant coordinator will contact you. You’ll need to go to the hospital right away, so it’s important to stay close by.

One MyPBCteam member shared, “The hardest part is waiting for the call for a liver and not being able to travel past one hour because that’s the time they give you to get to the hospital.”

Matching With a Living Donor

Most people receive a liver from someone who has died, but that’s not the only option. About 5 percent of transplants come from living donors, such as a family member. In this type of transplant, the donor gives a lobe (portion) of their liver, not the whole organ. A healthy liver is able to regenerate itself — grow back to its full size — in both the donor and the recipient.

A person who’s willing to donate also needs to be evaluated. Your transplant team will run tests to make sure the donor is a safe and healthy match for you. Your doctors will confirm that your potential donor:

• Has a compatible blood type
• Has a body size similar to yours
• Is in good health and has no significant medical conditions
• Is 18 to 60 years old

• Is emotionally connected to you and committed to donating

This evaluation usually takes two to four weeks. However, in urgent situations, your transplant team may be able to complete the process in two days.

Preparing for Your Liver Transplant

When a donated liver becomes available, your transplant coordinator will call you immediately. They’ll give you instructions on how to prepare for your surgery and tell you to go straight to the hospital.

When you arrive, you’ll meet with your transplant team. They’ll perform tests to make sure you’re healthy enough to have surgery. Their goal is to start your transplant surgery as soon as possible.

Duration of Liver Transplant Surgery

Liver transplant surgery can take a long time — up to 12 hours, sometimes even a bit longer. During the operation, your surgeon will remove your damaged liver and replace it with the donor liver. The transplanted liver will be connected to your bile ducts and blood vessels so that it can begin working in your body. In living donor liver transplants, the liver recipient and donor have surgery at the same time.

Factors that may complicate the surgery and make it take longer include:

• Trouble removing the diseased liver
• Challenges connecting the donor liver
• Complications such as bleeding

If you have family or friends waiting at the transplant center, a member of your care team will check in with them on your progress throughout the surgery.

After Liver Transplant Surgery

Recovery after a liver transplant happens in stages. In the beginning, you’ll require a lot of care as you gradually recover and regain strength.

Recovery at the Hospital

When your liver transplant is finished, you’ll be moved to the intensive care unit (ICU). Your care team will monitor you closely, and you’ll receive fluids and nutrition intravenously until you’re able to eat and drink again.

Your providers will do blood tests to check how well your new liver is working. To prevent your body from rejecting your new liver, you’ll start taking immunosuppressants — drugs that weaken the immune system. You’ll need to stay on this antirejection medicine for the rest of your life. You may stay in the ICU for a few days — or however long your care team decides — before moving to a regular hospital room.

Most people remain in the hospital for up to three weeks after transplant surgery. During your stay, you’ll begin eating and drinking again and learning how to care for yourself at home.

Long-Term Recovery at Home

While you continue to recover at home, your follow-up care will include frequent checkups with a care team member to make sure your new liver is working well and catch any problems early. These checkups usually include blood tests.

The length of full recovery depends on different factors, such as how sick you were before surgery. Some people start feeling more like themselves after a few months and can get back to their normal activities. For others, it may take six months or more to feel completely healed. No matter how long it takes, each step forward is a sign that your body is healing and adjusting to your new liver.

Talk With Others Who Understand

MyPBCteam is the social network for people with primary biliary cholangitis and their loved ones. On MyPBCteam, 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? How long did it take for you to go through the process? Share your experiences in the comments below, or start a conversation by posting on your Activities page.