How are transplanted organs allocated?
The United Network for Organ Sharing(UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplants, including liver, kidney, pancreas, heart, lung, and intestinal.
UNOS receives data from hospitals and medical centers throughout the country regarding adults and children who need organ transplants. The transplant team that currently follows you is responsible for sending the data to UNOS, and updating them as your condition changes.
Criteria have been developed to ensure that all people on the waiting list are judged fairly as to the severity of their illness and the urgency of receiving a transplant.
For patients waiting for a kidney, organs are distributed based on waiting time, donor/recipient immune system incompatibility, pediatric status, prior living donor status, how far from donor hospital, and the survival benefit the patient may receive from that organ.
In addition, kidneys may be preferably given to patients who are a perfect match with the donor (which means that the genetic match is a 6 out of 6) because those kidneys are known to last longer than lesser matches. Patients with very high antibody levels due to prior transplant(s), blood transfusion(s) and/or pregnancy may also receive priority when a good match is found.
When a donor organ becomes available, a computer searches all the people on the waiting list for a kidney and sets aside those who are not good matches for the available kidney. A new list is made from the remaining candidates. The person at the top of the specialized list is considered for the transplant. If he/she is not a good candidate, for whatever reason, the next person is considered, and so forth.
Some reasons that people lower on the list might be considered before a person at the top include the size of the donor organ and the geographic distance between the donor and the recipient. A negative crossmatch (where donor and recipient cells are mixed to make sure there is no reaction) is also needed prior to the transplant.
Where do transplanted organs come from?
Family members or individuals who are unrelated (spouses, friends, co-workers, neighbors, etc.) can donate one of their kidneys to someone who is in need of a kidney transplant. In some cases, an altruistic donor (a person who wants to donate a kidney but has no specific recipient in mind) may be a donor. These types of transplants are called living donor transplants. Individuals who donate a kidney can lead healthy lives with the kidney that remains. Visit the Living Donor Kidney Center section of our website to learn more about living donation.
Many kidneys that are transplanted come from deceased organ donors. Deceased organ donors are people who are brain dead and cannot survive their illness and had previously made the decision to donate their organs upon death (by signing up at their local Department of Motor Vehicles or by joining a state or national donor registry). Parents or spouses can also agree to donate a relative's organs. Donors can come from any part of the United States. This type of transplant is called a deceased donor (formerly known as cadaveric) transplant.
A person receiving a deceased donor transplant usually receives only one kidney, but in rare situations, he/she may receive two kidneys from a deceased donor.
There are different types of deceased donors, and it is important to understand the differences between the types because you will need to decide whether or not you are willing to accept a transplant from certain types of donors.
Each donated kidney has a KDPI (Kidney Donor Profile Index) score. This is a score from 0-100 that is calculated based on 10 factors about the donor. The score measures how long the kidney is likely to work. A lower KDPI is better.
By transplanting kidneys from special types of deceased donors into carefully selected patients who are in need of a kidney transplant, we are able to transplant patients faster. This is important due to the long wait time in our region as well as the risk of complications or death while on the waiting list.
For these kidneys, transplant coordinators, physicians, and other transplant team members will discuss the pros and cons to help each patient decide which options might be best for them. This ensures that patients have the information to make a decision as to whether to give their consent to be considered for these special types of kidneys.
As described above, high KDPI kidneys last a shorter amount of time, therefore, patients may consider giving permission to be considered for a “High KDPI” kidney in order to try to receive a kidney faster, instead of waiting for a more ‘ideal’ kidney for which they would need to wait many more years.
PHS Increased Risk Kidneys are another option for patients who want to get transplanted faster. PHS kidneys come from a donor who had a higher chance of having HIV or other blood diseases, such as Hepatitis C due to certain social behaviors (such as intravenous drug use or risky sexual behavior).
These kidneys typically come from younger, healthier donors, and usually last 10 to 15 years. PHS kidneys have a very slight risk of an infection (less than 0.3 percent). Learn more about PHS increased risk donors here.
When patients do not have any potential living donors, we recommend that patients discuss these special options with their transplant coordinator and physicians, as these kidneys are important opportunities for getting transplanted faster due to the ongoing severe shortage of organs available for transplantation.
How many people in the United States need a kidney transplant?
Currently, there are more than 95,000 people waiting for a kidney transplant in the United States. More than 11,000 of those patients live in the New York tri-state area (NY, NJ, CT).
You can visit the United Network for Organ Sharing (UNOS) website for statistics of patients awaiting a kidney transplant, and the number of patients who underwent a transplant this year.
Why is a kidney transplant recommended?
A kidney transplant is recommended for people who have serious kidney dysfunction and will not be able to live without dialysis or a transplant.
Some of the most common kidney diseases for which transplants are performed include diabetes, high blood pressure, glomerular disease, and polycystic disease. However, not all cases of those diseases require kidney transplantation. Always consult your physician for a diagnosis.
For the majority of patients, kidney transplantation offers better survival and better quality of life compared to remaining on dialysis.
A patient undergoing dialysis
Is my child allowed to be listed in more than one transplant center?
It is possible to be listed at more than one transplant center; this is called "multiple listing or multi-listing".
It is generally not beneficial to list at more than one transplant center within the local geographic region (and is not permitted in New York); therefore patients may list at different transplant centers in different geographic regions. You can click here to view a map of the different regions.
The United Network for Organ Sharing also has a section explaining multiple listing available on their website.
How is my child placed on the waiting list for a new kidney?
The first step is to be referred to our transplant center. Your child’s kidney doctor, primary care physician, dialysis unit, or other medical professionals can refer you. In addition, you can contact us to refer your child directly. Your insurance company may also have a list of preferred transplant centers.
Once you are referred to our program, we will ask you some basic questions over the phone and will then schedule you to visit us with your child for a pre-transplant evaluation.
This extensive evaluation must be completed before your child can be placed on the transplant list. Testing includes:
Blood tests are done to gather information that will help determine how urgent it is that your child is placed on the transplant list, as well as ensure that your child receives a donor organ that is a good match. Some of the tests you may already be familiar with, since they evaluate the health of your child’s kidneys and other organs.
These tests may include:
• Blood chemistries — These may include serum creatinine, electrolytes (such as sodium and potassium), cholesterol, and liver function tests.
• Clotting studies, such as prothrombin time (PT) and partial thromboplastin time (PTT) — tests that measure the time it takes for blood to clot.
Other blood tests will help improve the chances that the donor organ will not be rejected. They may include:
• Blood type: Each person has a specific blood type: type A, B, AB, or O. When receiving a transfusion, the blood received must be a compatible type with your own, or a reaction will occur. A similar reaction will occur if a donor organ of a different blood type is transplanted into your child’s body. These reactions can be avoided by matching the blood types of your child and the donor. The table below describes what blood types are compatible.
• In rare cases, transplants between a donor and recipient who have different blood types may occur by using medications to reduce the chance of a reaction. This is called ABO-incompatible transplantation.
• Human Leukocyte Antigens (HLA) and Panel Reactive Antibody (PRA): These tests help determine the likelihood of success of an organ transplant by checking for antibodies in your child’s blood. Antibodies are made by the body's immune system in reaction to a foreign substance, such as a blood transfusion, a virus, or a transplanted organ, and women may also develop antibodies during pregnancy. Antibodies in the bloodstream will try to attack transplanted organs, therefore, people who receive a transplant must take medications called immunosuppressants that decrease this immune response.
• Viral Studies: These tests determine if your child has been exposed to viruses that may recur after transplant and help us to tailor your child’s medication regimen after transplant.
Diagnostic tests that are performed are necessary to understand your complete medical status. The following are some of the other tests that may be performed, although many of the tests are decided on an individual basis:
• Renal ultrasound: A non-invasive test in which a transducer is passed over the kidney producing sound waves which bounce off of the kidney, transmitting a picture of the organ on a video screen. The test is used to determine the size and shape of the kidney, and to detect a mass, kidney stone, cyst, or other abnormality.
• CT Scan of Abdomen and Pelvis: A diagnostic medical test that produces multiple pictures of the inside of the body. These pictures show your child’s internal organs, bones, soft tissue and blood vessels in greater detail than traditional x-rays. CT scans are used to screen your child for infection, cancer, kidney and bladder stones, abdominal aortic aneurysms (AAA), and to plan for your child’s transplant surgery by seeing their blood vessels in greater detail.
• Kidney biopsy: A procedure in which tissue samples are removed (with a needle or during surgery) from the kidney for examination under a microscope. Biopsies are sometimes used to determine the cause of your child’s kidney disease, which can be important since some kidney disease can recur in the transplanted kidney.
During the evaluation process, you and your child will meet with many members of the transplant team. The transplant team will consider all information from interviews, your child’s medical history, physical examination, and diagnostic tests in determining whether your child can be a candidate for kidney transplantation. After your child’s evaluation is complete and the transplant team believes that your child is an acceptable candidate for transplantation, your child will be placed on the United Network for Organ Sharing (UNOS) waiting list.
Is my child a candidate for a kidney transplant?
In order to determine whether your child may be a kidney transplant candidate, you should schedule an evaluation visit at our transplant center.
We cannot usually determine your child’s candidacy just by looking at their medical records. Some patients who look very sick on paper may be considered a candidate once you visit with the transplant center.
While dialysis center staff are very helpful about transplant education, they may not be very familiar with the requirement used at each transplant center. Therefore, it is best to come for an evaluation visit.
How are transplanted organs allocated?
The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplants, including liver, kidney, pancreas, heart, lung, and intestinal.
UNOS receives data from hospitals and medical centers throughout the country regarding adults and children who need organ transplants. The transplant team that currently follows you is responsible for sending the data to UNOS and updating them as your condition changes.
Criteria have been developed to ensure that all people on the waiting list are judged fairly as to the severity of their illness and the urgency of receiving a transplant.
For patients waiting for a kidney, organs are distributed based on waiting time, donor/recipient immune system incompatibility, pediatric status, prior living donor status, how far from donor hospital, and the survival benefit the patient may receive from that organ.
In addition, kidneys may be preferably given to patients who are a perfect match with the donor (which means that the genetic match is a 6 out of 6) because those kidneys are known to last longer than lesser matches.
Patients with very high antibody levels due to prior transplant(s), blood transfusion(s) and/or pregnancy may also receive priority when a good match is found.
When a donor organ becomes available, a computer searches all the people on the waiting list for a kidney and sets aside those who are not good matches for the available kidney.
A new list is made from the remaining candidates. The person at the top of the specialized list is considered for the transplant. If he/she is not a good candidate, for whatever reason, the next person is considered, and so forth. Some reasons that people lower on the list might be considered before a person at the top include the size of the donor organ and the geographic distance between the donor and the recipient. A negative crossmatch (where donor and recipient cells are mixed to make sure there is no reaction) is also needed prior to the transplant.
Where do transplanted organs come from?
Living Donors
Family members or individuals who are unrelated (spouses, friends, co-workers, neighbors, etc.) can donate one of their kidneys to someone who is in need of a kidney transplant.
In some cases, an altruistic donor (a person who wants to donate a kidney but has no specific recipient in mind) may be a donor.
These types of transplants are called living donor transplants. Individuals who donate a kidney can lead healthy lives with the kidney that remains. Visit the Living Donor Kidney Center section of our website to learn more about living donation.
Deceased Donors
Many kidneys that are transplanted come from deceased organ donors. This type of transplant is called a deceased donor (formerly known as cadaveric) transplant.
Deceased organ donors are people who are brain dead and cannot survive their illness and had previously made the decision to donate their organs upon death (by signing up at their local Department of Motor Vehicles or by joining a state or national donor registry). Parents or spouses can also agree to donate a relative's organs. Donors can come from any part of the United States.
There are different types of deceased donors, and it is important to understand the differences between the types because you will need to decide whether or not you are willing to accept a transplant from certain types of donors for your child.
Each donated kidney has a Kidney Donor Profile Index (KDPI) score. This is a score from 0-100 that is calculated based on 10 factors about the donor. The score measures how long the kidney is likely to work. A lower KDPI is better.
• Low KDPI Score (<20): A low KDPI (under 20) means the kidney is from a donor who was younger and healthier when they died. A kidney with a KDPI score of 20 means it is likely to work longer than most (80%) of other donor kidneys. These kidneys typically last 10-15 years. Patients who receive a low KDPI kidney are usually the youngest and healthiest of the patients on the waiting list (including children), as these patients are expected to need a kidney that has the best capacity to last many years.
• Standard KDPI Score (20 to 85): These kidneys fall between the low and high KDPI kidneys. These kidneys typically last 10 to 15 years. These kidneys are sometimes given to children.
• High KDPI Score (over 85): A high KDPI score (over 85) means the donor was older or sicker when they died. These kidneys typically last 7-10 years after transplant. They are also called ECD (extended donor criteria) kidneys. We do not typically utilize these types of kidneys for children.
PHS Increased Risk Kidneys are another option for patients who want to get transplanted faster. PHS kidneys come from a donor who had a higher chance of having HIV or other blood diseases, such as Hepatitis C due to certain social behaviors (such as intravenous drug use or risky sexual behavior).
These kidneys typically come from younger, healthier donors, and usually last 10 to 15 years. PHS kidneys have a very slightly risk of an infection (less than 0.3%). Learn more about PHS increased risk donors.
When patients do not have any potential living donors, we recommend that patients discuss these special options with their transplant coordinator and physicians, as these kidneys are important opportunities for getting transplanted faster due to the ongoing severe shortage of organs available for transplantation.
How many children in the United States need a kidney transplant?
Currently, there are more than 95,000 people in total waiting for a kidney transplant in the United States. As of April 2018, there were 215 kids age 1 to 5 years waiting, 233 who are between the ages of 6 and 10, and 575 children between 11 and 17 years old.
You can visit the United Network for Organ Sharing (UNOS) website for statistics of patients awaiting a kidney transplant, and the number of patients who underwent a transplant this year.