On the waiting list for a donor organ

We cannot say exactly how long you will have to wait for a new organ. The waiting time is different for everyone. The allocation of a donor organ is based on a system that assigns points to a number of characteristics of the donor and recipient. This includes, for example, how long someone has already been waiting (waiting time), as well as how well a donor organ matches the recipient. The person who has been waiting the longest is not always the next in line.

The point system for waiting time differs per organ:

• For the waiting lists for a heart, lungs, liver, small intestine, or pancreas, the point system for the waiting time starts as soon as Eurotransplant has entered all your details and your physician has given you an active status.
• For the kidney waiting list, the point system for the waiting time starts from the first day you started dialysis. Sometimes you can receive a kidney before you start dialysis. In that case, you must have extra points for other characteristics.

Your medical situation is also important:

• Heart patients who are in the intensive care unit can be given 'international high urgent' status. This means they are placed high on the international waiting list.
• If you are waiting for a new liver or lungs, medical urgency is the most decisive factor, and waiting time has less influence.
• Age can also play an important role: children are sometimes given priority.

View the rules per organ

There are several reasons why you might be removed from the waiting list:

• You have received a donor organ.
• You have passed away.
• Your medical situation has improved, making a transplant (temporarily) no longer necessary.

If you are on the waiting list for an organ transplant, it can also happen that you are temporarily ineligible for a transplant. This can be caused by, for example:

• An infection or other medical complication.
• A temporary deterioration of your health.
• Personal circumstances due to which you do not want a transplant (for a while).

In such a case, your attending physician and the transplant team may decide to temporarily place you as Not Transplantable (NT) to be registered.

That means:

• You are temporarily inactive on the waiting list
• You will not receive a call for a transplantation
• You do retain the waiting time you previously built up
• The period you are registered as NT does not count as waiting time

As soon as your doctor indicates you are fit for transplantation again, you will be made active on the waiting list again.

A team of medical specialists from all 8 Eurotransplant countries makes rules for allocating donor organs. Doctors from Dutch transplantation centers determine the rules for allocating organs in the Netherlands. Based on these rules, the computer program performs the calculations to allocate organs to patients.

The transplantation team enters your details into the central computer system of Eurotransplant:

• Personal details: name, address, date of birth, gender, insurance details.
• The organ or organs for which you are placed on the waiting list.
• Transplant hospital.
• Medical data: height and weight, why you need an organ (diagnosis), blood group, and your tissue typing.

Tissue typing is especially important if you need a new kidney. This is a code for specific characteristics of body cells. It allows the computer system to search for a donor kidney with matching characteristics. If the tissue typings match as closely as possible, the chance of your body rejecting the new kidney is smaller.

Protection of personal data

The registration of your data for the waiting list and the so-called 'follow-up' of any potential transplant comply with laws regarding the protection of personal data and patient rights.

Registration with Eurotransplant: you are on the waiting list

Once your data has been entered into the computer file, you are on the waiting list. You will receive a registration number and a donor profile. This states what constitutes a suitable donor for you, such as:

• For example, what should that person's approximate age be?
• Are height and weight important?

Eurotransplant manages the waiting list and allocates the organs, on behalf of the Dutch Transplantation Foundation (NTS).

Your own doctor can explain how you are listed on the waiting list. Your status sometimes changes, and your doctor will also explain why then. For heart, kidney, lungs, and liver, you can request your own status.

1. Fill out the form donor organ waiting list status .
2. Scan the signed form
3. Send it by email to statuswachtlijst@transplantatiestichting.nl

Or send the signed form to:

• Dutch Transplant Foundation
• Attn. Allocation Department
• P.O. Box 2304
• 2301 CH Leiden

You will then receive a letter from us stating your status as it is registered with us at that time.

Requesting status for your child

• When requesting the waiting list status, include a copy of a valid ID (passport, identity card, or driver's license) of both yourself and your child.
• Your ID is required to verify your identity. We compare your name, date of birth, and Citizen Service Number (BSN) with the information we already have on file.

Privacy Statement

Would you like to know more about the processing of your personal data when requesting your waiting list status?

See: privacy statement waiting list status

When you request your status on the waiting list, the Dutch Transplant Foundation (NTS) processes your personal data. The NTS is responsible for this. We think it is important that you know what we do with your data and what your rights are.

For what purposes do we use your data?

• To verify your identity.
• To send you the requested information.
• To handle any incidents.

What data do we use?

• A copy of your ID to verify your identity.
• We compare your name, date of birth, and Citizen Service Number (BSN) with our records.
• Make other information on the copy invisible (for example, using the Dutch government's Kopie-ID app).
• If you do not do this, we cannot process your request.
• Data we retain from your application:
  • Date of receipt.
  • For which organ you are submitting the application.
  • Which ID document we checked.
  • What information we provided to you.

How long do we keep your data?

• The copy of your ID is deleted immediately after verification.
• Your application is deleted immediately after processing.
• Data regarding the fact that you submitted an application is kept for 7 years after submission.

It is important that you are as fit as possible for the transplant. Some tips for a healthy lifestyle:

• Do not smoke.
• Do not drink alcohol.
• Eat healthy.
• If you are able to: get enough exercise.

Ask a dietitian or physiotherapist for advice if necessary.

Once you are on the waiting list, you must attend regular check-ups. You will go to your own hospital or the transplant hospital for these. How often you need a check-up depends on the severity of your illness and any other conditions.

Your nurse specialist will contact you regularly to ask how you are doing. Do you feel ill during your waiting period or do you notice that your physical condition is deteriorating? Then call your doctor or contact person on the transplant team. You can also contact your general practitioner.

The waiting time for a suitable organ is an exciting and uncertain period. You realize that you now have a chance of a transplant. At the same time, it is an intense period, especially because you do not know what lies ahead.

• How long do I have to wait?
• Will the organ arrive in time?
• What is life like after the transplant?

Are you suffering from anxiety or depressive thoughts? Talk about it, because something can often be done. What can help:

• Medication.
• Contact with fellow patients.
• Conversations with the transplant hospital's social worker.

Ask your transplant team contact person about the possibilities. Are you afraid that you won't be eligible for a transplant if you are anxious or depressed? That is not the case, so please talk about it.

Organs are sometimes exchanged between countries. This is done fairly: if Belgium receives an organ from the Netherlands, the Netherlands is 'owed an organ'. The system keeps track of this balance. Exactly how this works differs per organ.

If there is a suitable organ for you and your doctor thinks it can go ahead, you will be called. You must then come to the transplant hospital as soon as possible. It is also possible that an ambulance will pick you up. From the moment of the call, you are no longer allowed to eat and drink: you must fast before the operation.

Another possibility: you are called up as a backup

Sometimes two patients are called up for a transplant:

• the patient whose turn it is AND
• the patient who is second on the list. 

Your doctor will always tell you if you are the backup. A backup is sometimes called because after checking the donor organ it becomes clear that the organ does not suit the first patient. Or that the patient cannot be operated on after all. Then the backup is immediately available. This prevents loss of time.

It can be disappointing if you come for nothing. But afterwards, many people are also glad that they now know what to expect during a next call.

At the hospital, a number of examinations take place first. The transplant team definitively determines whether you are fit enough for the operation.

Crossmatch: test for rejection

The hospital also investigates the risk of rejection of the donor organ. This is done using the crossmatch test. The hospital checks whether the donor's blood matches yours and whether you are producing antibodies against the donor organ. The crossmatch test takes several hours.

The team usually performs the crossmatch test in kidney patients before the surgery. For other organs, the transplant team may decide to proceed with the surgery before the crossmatch results are in. They do this, for example, if the organ needs to be transplanted quickly and the patient has an 'easy' tissue type.

The donor's surgery usually only takes place once you are already at the hospital. Your loved ones are allowed to stay with you while you wait.

Is the donor organ good? Then it must be transported as quickly as possible to the transplant hospital where you are. This can be done using a special organ ambulance or sometimes by helicopter or airplane.

The allocation of an organ to a patient on the waiting list happens before the organ is removed. After the donor's surgery, it sometimes turns out that the organ is not suitable for transplantation. In that case, the transplantation will not take place.

The surgery will proceed if:

• The result of the crossmatch is good
• The quality of the organ is good.

How the transplantation proceeds varies per organ and per hospital. Request the information from your own transplant hospital.

After a transplantation, you receive medications to prevent rejection of the new organ. These medications are called anti-rejection drugs or immunosuppressants. You will have to use these medications for the rest of your life.

You will receive an explanation of the signs of rejection. If you notice anything, you should contact your transplant team. Signs of rejection do not automatically mean that you will lose the organ. Often, the medications can be adjusted so that the rejection stops.

The first 3 months after surgery, the risk of rejection is highest. This is a tense time, both for you and for the people around you. Even after that, some people find it difficult to trust their new organ. Talking to others – for example, your pulmonologist, a psychologist, or peers – can help.

The transplantation also has a mental impact. Many people feel grateful, but it is also getting used to trusting your body again. You are not alone. Your transplant team, your loved ones, and sometimes peers can help you find your way.

A transplantation – and everything leading up to it – is hard, both physically and emotionally. Many patients say that their lives have permanently changed. Some actually enjoy life and each other more.

But if you were ill for a long time first and can suddenly do much more afterwards, that takes some getting used to as well. A lot changes for partners and family members too. Together, you have to find a new balance. It can be helpful to talk about this before the operation, with each other and with the doctor. Contact with other people who have had a transplant can also provide support.

Many people who have received an organ feel gratitude. It is possible to write a thank-you letter to the donor's family via the Dutch Transplantation Foundation (NTS) or the organ donation coordinator.

You can do this at any time – whenever you are ready. The letter must be anonymous: without a name or identifiable details. The NTS or coordinator will ensure that your letter reaches the right place. Many families greatly appreciate this gesture.

More about the thank-you letter