Getting on the list

Before you’re listed

Once you and your nephrologist decide that a kidney 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:

• Kidney function tests such as glomerular filtration rate (GFR)
• Physical exam with routine laboratory tests
• Medical, family, and social histories
• Compatibility testing, which tells your transplant team about important information that can help make sure you and your donor match:
• Blood type (A/B/O) and Human leukocyte antigens (HLA) or tissue type testing
• Panel reactive antibodies (PRA) may also be measured to determine the presence of antibodies in your blood that may react to a transplant
• Viral testing to check for active infections, such as hepatitis C (HCV), Epstein-Barr virus (EBV), or human immunodeficiency virus (HIV)
• 24-hour urine tests

Imaging tests such as an ultrasound, may also be conducted. Such testing helps your doctors visualize the amount of disease in your damaged kidney.

Depending upon your health and medical history and the requirements of your transplant center more tests may also be necessary. Your transplant coordinator can help you better understand all of the tests you will need to have done before you become a waiting list candidate.

Because waiting times can range from weeks to years, some tests will need to be performed several times to make sure your status on the list is kept up to date. 

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 register at multiple centers. And remember, each center has its own evaluation process. You may need additional 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 tests and appointments.

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 to 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 changed your dialysis unit or treatment schedule
• You've been hospitalized, 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 type of tests needed will depend on your transplant center and could include keeping your medical history and physical exams updated, as well as evaluating PRA levels, routine cancer screenings, and tests that measure the health of your heart—especially if you have diabetes.

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