Getting on the list
Before you're listed
Once you and your doctor decide that a liver transplant is right for you, your name will be placed on the United Network for Organ Sharing (UNOS) national transplant waiting list. In order to do this, your transplant team will need to perform a series of medical tests, which may include:
- Physical exam with routine laboratory tests (blood chemistry and blood counts)
- Medical, family, and social histories
- Blood typing (A/B/O)
- Viral testing to check for infections, such as hepatitis C (HCV), Epstein-Barr virus (EBV), or human immunodeficiency virus (HIV)
- Panel reactive antibodies (PRA) may also be measured to see if there are specific antibodies in your blood. This helps your doctors understand how your body will react to a transplant.
- 24-hour urine test
- A liver may also be performed
Your “MELD” score is another key part of your evaluation. MELD stands for model for end-stage liver disease. MELD is a numerical scale that determines how urgently you need a liver transplant within the next 3 months. Your score is based on certain laboratory tests, such as:
- Serum bilirubin, which measures how well your liver gets rid of bile
- INR, or international normalized ratio for prothrombin time, which measures your liver’s ability to make substances that help the blood form clots
- Serum creatinine, which measures how well your kidneys are working
MELD scores will need to be determined on an ongoing basis while you are a candidate. PELD (Pediatric End-Stage Liver Disease) is a similar numerical scale for pediatric patients. Your transplant coordinator will tell you when it is needed.
Steps to take for placement on the UNOS transplant waiting list
- Choose a transplant hospital; you may be able to choose your own center (self-refer) or you can ask your physician for a referral
- Choose a transplant hospital that meets your needs (financial, location, and experience with the type of transplant you need). Review the UNOS website for information on different transplant programs across the country to help you narrow your choices
- Schedule an appointment at the transplant hospital of your choice
- Get the information you need by asking key questions
- When your doctor determines that you are an appropriate transplant candidate, your transplant team will add you to the national waiting list and notify you of your waiting list status
- Do not assume that your name is on the waiting list; make sure you get a letter from your transplant center confirming that your name has been listed
- If you do not hear back from your transplant team, call your transplant coordinator to follow up
- To hold your place on the list, be sure to complete all of your evaluations and attend all scheduled appointments
Many things affect waiting time, including where you live, so you may want to consider registering at a local center and another center that is not in your specific region. Your transplant coordinator will be able to help you list at multiple centers. And remember, each center has its own evaluation process and you may need more testing before being added to the list. You will also need to be able to travel to any center you register with for all scheduled appointments.
Before your transplant you may be taking many different medications. Be sure to continue to take these medications as prescribed unless your doctor tells you otherwise.
Once you are a candidate
Once you are a waiting list candidate, it is very important that you do everything you can to stay on the list. A donated organ meant for you could end up going to the next candidate on the list if you don’t keep up-to-date with needed tests, or if your contact information is out of date.
The best way to make sure you’re ready when a donor organ becomes available is to keep your transplant coordinator updated. Be sure to call if:
- You've received a blood transfusion
- You've been hospitalized, have had an infection, or if there have been any changes in your laboratory test results
- You’ve lost or gained weight
- Your health status has changed
- There have been changes to your medications
- Your telephone number or address has changed
- You’re planning to go out of town
- There's been a change in your medical insurance
Transplant candidates usually need to have follow-up tests. The testing needed will depend on your transplant center and could include keeping your medical history and physical exams updated, as well as evaluating , routine cancer screenings, and abdominal ultrasound to visually assess your liver.