If primary biliary cholangitis (PBC) advances to liver failure, you’ll need an organ transplant. This is when doctors remove your unhealthy liver and replace it with a healthy one. A liver – either the whole organ or part of one – could come from someone who has died or from a living donor.
It could take many months to find out whether you’re ready for a liver transplant. This complex process will involve your hepatologist, a doctor who diagnoses and treats disorders of the liver and bile ducts. They could also refer you to a center that does liver transplants.
At the first sign of liver failure, or if you have late-stage PBC, your doctor should refer you for a liver transplant, even if you’re not sick.
How Often Do People With PBC Need a Liver Transplant?
PBC usually moves slowly, especially with an earlier diagnosis and treatment. The disease takes around 15 to 20 years to advance to the final stage. Medicine will help to control your symptoms, and you’ll probably live for years without PBC having a major impact on your daily life.
You’ll need a liver transplant if doctors discover the disease in a later stage or if you have a more aggressive form of the disease.
How Do I Know if I Need a Liver Transplant?
Your health care team will consider several things when deciding if your PBC is advanced enough for a liver transplant, including:
Treatment isn’t working
If medications like ursodeoxycholic acid (UDCA) and obeticholic acid (OCA) don't stop your disease from getting worse and your liver continues to fail, a transplant may be the next step.
Liver failure
When severe scarring of the liver, known as cirrhosis, causes your liver to fail, it won’t be able to work correctly, and you’ll need a transplant.
Other health problems
PBC can cause other serious health problems, such as bleeding in your digestive system (GI tract) and liver cancer. These complications may call for a liver transplant.
Your doctor will keep an eye out for other signs you’re ready for a liver transplant, including:
Worsening symptoms. A buildup of fluid in the belly, muscle weakness, and confusion or memory loss can prompt your doctor to refer you for a transplant.
Bacterial cholangitis. Your doctor may refer you for a transplant if you have repeated inflammation of your bile duct system, called bacterial cholangitis.
Poor quality of life. When everyday tasks and work become a challenge, it could mean you’re ready for a liver transplant.
Liver cancer screening results. If your doctor spots a concerning lesion during your liver cancer screening, they could put you on the transplant waiting list right away. That’s because if the tumor gets too big, you may not be eligible for a transplant.
MELD-Na Scoring System
Unfortunately, there are more people on the liver transplant waiting list than available organs.
The Model for End-Stage Liver Disease (MELD)-Na (sodium) scoring system is in place to make sure people who need a liver the most have surgery first. It takes different things into account to assign a priority to liver transplants:
Bilirubin. The level of bile (bilirubin) in your blood shows how well your liver is expelling this substance. Higher levels of bilirubin can trigger yellowing of the skin and eyes, called jaundice.
International normalized ratio (INR). This measures how well your liver makes proteins that help your blood to clot. People with changes to their INR tend to bruise and bleed easily.
Creatinine. Measuring creatinine shows how well your kidneys are working. End-stage liver disease can also affect your kidneys.
Sodium. Your levels of this electrolyte could be a sign of serious liver disease.
Your MELD-Na score can range from 6 to 40: The higher the number, the more severe your liver disease is. If it goes up, you’ll move higher on the transplant waiting list. Your score will go up and down a few points based on your current health and differences in lab values.
There's also a system of exception points that gives higher waitlist priority to people whose symptoms are severe, but their condition isn’t reflected in their MELD-Na score.
As your MELD-Na score rises, you’ll need blood tests more often, possibly every week. Your health care team will update the liver transplant database with your current score.
How Long Could I Wait to Get a Donor Organ?
There’s no way to know for sure how long you could wait for a new liver. Some people get one in days or weeks, but it could take months or years if there's no living donor. Your waiting time depends on:
- Blood type
- Body size
- How sick you are
The transplant waiting list is managed by the United Network for Organ Sharing (UNOS). It administers the Organ Procurement and Transplantation Network (OPTN) that governs the assignment of organs for transplant in the United States.
In 2020, OPTN introduced a new policy to assign livers for transplant. It focuses on how urgently someone needs a liver and the distance between hospitals.
Hospitals first offer livers from deceased donors to the most in-need patients within 500 nautical miles of the donor hospital. If the donor hospital doesn’t accept the organ, they offer it to less-urgent patients within a closer range.
This policy replaces the old system of local donation areas and regions, aiming to better match organs with those in greatest need.
Liver Transplant Questions
You’ll have an entire team of doctors, nurses, and other health care professionals to guide you through the liver transplant process. They’ll explain what to expect and answer your questions along the way. Here are some things you may want to know as you prepare for a transplant:
- Do I have other treatment options besides a liver transplant?
- What are the pros and cons of a liver transplant?
- How do you judge if I’m a candidate for a liver transplant?
- How will I know if I’m on the waiting list?
- How long could I wait to have a transplant?
- How long has the hospital been performing transplants for PBC?
- What are the chances of the organ working and the patient surviving a PBC transplant at this hospital? How does this measure against other hospitals?
- How do you know if you’ll accept a specific liver?
- Do you do living donor transplants? Am I eligible for this type of transplant?
- How do you perform living donor transplants?
Does a Liver Transplant Cure PBC?
A successful liver transplant will usually ease most of the symptoms of PBC, including pruritus (itchiness). But you may still feel tired. Most people live at least 10 years after the surgery.
It’s possible that your PBC will come back and affect your new liver. This is called recurrent PBC, and it affects between 20% and 30% of people who’ve had a liver transplant.
Show Sources
Photo Credit: iStock/Getty Images
Gene Expression: “Primary Biliary Cholangitis, Liver Transplantation, and Hepatocellular Carcinoma: A Mini-review.”
Penn Medicine: “Understanding the MELD Score.”
National Institute of Diabetes and Digestive and Kidney Diseases: “Treatment of Primary Biliary Cholangitis (Primary Biliary Cirrhosis).”
Clinical Liver Disease: “Diagnosis and Treatment of Primary Biliary Cholangitis: A Patient‐Friendly Summary of the 2018 AASLD Practice Guidance.”
Cleveland Clinic: “Primary Biliary Cholangitis (PBC),” “Hepatorenal Syndrome (HRS).”
PBCers Organization: “Liver Transplant.”
American Liver Foundation: “Liver Transplant.”
Mayo Clinic: “6 signs your patient is ready for liver transplant referral.”
UCSF Health: “Primary Biliary Cirrhosis.”
Journal of Hepatology: “Liver transplantation for primary biliary cirrhosis: indications and risk of recurrence.”
