When a kidney is donated from someone who has died it’s called a deceased donation. More donor kidney transplants are needed than there are organs available. You may have to wait a long time, even years, for a deceased donor transplant.
How does deceased donation work?
The matching process for deceased donors and living donors is the same. The blood types must be able to work together (be compatible). A crossmatch is done between donor and recipient.
Before the donation, a deceased donor is on life support in an intensive care unit. Usually this is because of a severe brain injury or a tragic event. Sometimes it can be because of a severe illness. This person will die when the life support machine is taken off.
Deceased donor kidney donation can be done if the donor dies from a:
- heart or blood vessel related death
- brain death – no brain activity to keep the person alive
When there’s no chance of recovery, the healthcare team will talk to the person’s family or loved ones about the decision to stop life support. At this point organ donation is not talked about. This allows the person to die naturally. After the family decides to stop life support, the healthcare team will ask them about organ donation.
Organ donation happens after the person has died. It doesn’t cause the death of that person or affect a family’s decision to stop life support.
The criteria for organ donation are very strict. Because of this, about 1 of every 100 people who die will be able to donate their organs.
How do I know a donated kidney is healthy?
Before organs from deceased donors are used for transplant, they’re tested for disease and to make sure they are working well. But even when a kidney seems healthy enough to be transplanted, there is still a small risk that a donor kidney carries a disease.
The team that cares for the donor finds out as much information as possible about the deceased donor before a transplant can take place. They collect information about the donor’s health history from medical records and talking to people who knew the donor well. In some cases, there may not be anyone close to the donor to talk to. When this happens, there are more risks with this transplant because of the lack of information about the donor.
If you’re offered a kidney from a deceased donor, the transplant team feels the risk of developing a disease is less than the risk of you waiting longer on dialysis for a different kidney.
What do I learn about the deceased donor?
When you get the call for a transplant from a deceased donor, you’ll be told about the type of kidney being offered. You won’t get any other information about the donor. Just like with living donors, medical files are kept private.
Are there different categories for donated kidneys?
All deceased donor kidneys are grouped into 1 of 3 categories – standard criteria, expanded criteria, and increased risk (also called exceptional distribution).
Standard criteria is a kidney from a donor who is less than 60 years old.
Expanded criteria is a kidney from a donor who is 60 years of age or older; or a donor who is aged 50 – 59 years with other medical problems such as high blood pressure, high creatinine, or who may have died from a stroke. These transplanted kidneys don’t tend to last as long as standard criteria kidneys. Some recipients will still benefit from this type of kidney transplant when compared to the risk of staying on dialysis.
Exceptional distribution refers to the infection risk associated with the donor kidney. It isn’t about the quality of the kidney, but rather the donor’s medical or social history. It also refers to kidneys that come from donors with other medical conditions. For example, there may be no one who can give information about the donor’s history, previous blood transfusions, or previous surgery. But the kidney is working well enough to be considered for transplant. The transplant team won’t offer a kidney that doesn't work well enough.
Your Kidney Specialist may talk to you to see if you’d be willing to accept an expanded criteria or exceptional distribution kidney.
Some examples of an exceptional distribution donor include a donor:
- whose travel history is unknown and may have been exposed to Zika virus, TB (tuberculosis), or other infectious diseases, but at the time of donation there’s no signs of active infection
- with a remote history of low-risk cancer
- who tested positive for an infection that can be treated
- with high risk sexual or substance use behaviours. This may put the recipient at a very small risk (less than 0.5%) of infections such as hepatitis B, hepatitis C, or human immunodeficiency virus (HIV)
- who uses intravenous (IV) drugs
- who is a commercial sex worker
- who has traveled or lived in countries with high risks of infectious diseases
- who has spent time in jail or prison
You won’t be told why the kidney is in this category if you’re offered a kidney from a donor with exceptional distribution. But remember,
all donors have extensive screening done to look for infections. All these tests must show no sign of infection for the transplant doctor to offer a kidney from a donor with a higher risk.
You’ll get all the information about the risks, so you can decide whether to accept the kidney. You can say no if you feel it’s too risky for you. There are no penalties for saying no – you don’t go to the bottom of the transplant list. You decide what’s right for you.
All transplant recipients are watched closely for infections. In the unlikely event that you do get an infection, treatment will start right away.
Talk to your transplant team if you have questions about any of the types of kidneys you may get.
Why don’t we know all the risks?
We don’t know all the risks for a donated kidney because not all infectious diseases show up in testing right away. If someone was in contact with an infectious disease right before they died and donated their organs, tests that check for diseases may not show that there has been contact with a disease or virus.
For example, infectious diseases like human immunodeficiency virus (HIV), hepatitis B, and hepatitis C can be negative when testing is done soon after contact with the disease. Even though there’s a small risk of getting an infection from a donated kidney, most infections, including HIV, hepatitis B, and hepatitis C, can be treated, or cured.
When you’re waiting for a kidney transplant it’s a good idea to start asking yourself:
- Are you willing to accept a kidney when there’s a small risk of getting a disease?
- What are you willing to accept and not accept about a donated kidney?
- What questions do you want to ask the transplant doctor at the time of the offer?