Thanks to the treatments now available, the number of patients with primary biliary cholangitis (PBC) who need a liver transplant has dropped significantly — but the need for transplants hasn’t completely disappeared. Here’s what to expect if your care team has raised the possibility of a transplant.
How will I know I need a liver transplant?
The process starts with open conversations with your doctor about your health and treatment options.
Your doctor will routinely assess your liver health; if your treatment isn’t working as hoped, they will adjust your treatment plan, such as by trying a new therapy or dosage. Liver transplants are considered only after all other possible treatment options have been ruled out. Your care team will examine a series of laboratory and test results to determine if liver damage is so severe that a transplant is your best option.
It is important to realize that a liver transplant is not right for every patient, even if they have severe liver damage. Some people are not healthy enough to undergo the surgery. Certain individuals may also have a medical condition (such as severe heart disease) that would prevent a successful outcome if they received a transplant.
If you and your doctor agree that a liver transplant is likely right for you, your doctor will refer you to a transplant center for further evaluation.
What happens at a transplant center?
Each transplant center has its own set of guidelines on who can qualify for a transplant, which are usually posted on their websites. National guidelines are followed by all U.S. transplant centers.
Before you can be approved for a transplant, you will need at least one visit (and likely a series of visits) so the transplant center can evaluate your case. You may need additional tests as part of your evaluation.
During these visits, you will meet with members of your transplant team; this will likely include a transplant coordinator (your main point of contact), a transplant surgeon, a hepatologist and other specialists. You will receive information regarding the center’s specific policies and procedures, as well as:
- Information about placement on the national waiting list, and possible reasons for removal from the list.
- Information on the waiting period involved.
- Details on transplant surgery and recovery.
- Education on the long-term needs of living with a liver transplant, including medications that must be taken for the rest of your life.
Following your evaluations, the center will review your results and determine if you qualify for a transplant. Your transplant team will also make sure you understand the potential risks and drawbacks of a transplant. If you both qualify for a transplant and decide it’s right for you, the center will put your name on a national waiting list for a liver.
What is the anticipated waiting time?
The waiting period for a liver from a deceased donor can vary widely, from less than 30 days to more than 5 years.
The length of the waiting period for a liver transplant depends on a number of factors, including:
- Severity of your PBC.
- Your age.
- Place of residence.
- Blood type.
- Body size.
- Overall health.
- Availability of a matching liver.
How can the process for a liver transplant be accelerated?
If you receive approval for a transplant and do not have a living donor, the center will place your name on the national waiting list to receive a liver from a deceased donor.
You do not need to be placed on the list if you have a living donor, which will thus speed up the process.
How does insurance impact the transplant process?
Your transplant team will likely include an insurance case manager. This individual will assist with evaluating your medical insurance coverage for a transplant.
There are many assistance programs available for the individuals and families of someone undergoing a liver transplant, which can help with the costs of surgery, medications and patient care.
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