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 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 waiting time begins as soon as Eurotransplant has entered all your data and your doctor has given you an active status.
• For the waiting list for a kidney, the point system for waiting time begins 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 the status of 'internationally highly urgent.' This means they are placed high on the international waiting list.
• If you are waiting for a new liver or lung, medical urgency is the most determining factor, and waiting time has less influence.
• Age can also play an important role: children sometimes receive priority.

View the rules per organ

There are various 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 may also happen that you are temporarily ineligible for a transplant. This can be due to, 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 the time being).

In such a case, your attending physician and the transplant team may decide to temporarily mark you asNot Transplantable (NT) to be registered.

This means:

• You are temporarily inactive on the waiting list
• You will not be called for a transplant
• You do retain the waiting time you previously accumulated
• The period you are registered as NT does not count as waiting time

As soon as your doctor indicates that you are suitable for a transplant again, you will be placed back on the waiting list as active.

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

The transplant team enters your data 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 being placed on the waiting list.
• Transplant hospital.
• Medical details: height and weight, why you need an organ (diagnosis), blood type, and your tissue typing.

Tissue typing is especially important if you need a new kidney. This is a code for certain characteristics of body cells. It allows the computer system to search for a donor kidney with matching characteristics. If the tissue types are as good a match 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 a suitable donor is for you, such as:

• What should the approximate age of that person be, for example?
• Are height and weight important?

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

Your own doctor can explain how you are on the waiting list. Your status sometimes changes, and your doctor will also explain why. 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 with your status as it is currently registered with us.

Requesting status for your child

• When requesting the waiting list status, please include a copy of a valid ID (passport, identity card, or driver's license) for 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 how your personal data is processed when requesting your waiting list status?

See: privacy statement waiting list status

When you request your waiting list status, the Dutch Transplant Foundation (NTS) processes your personal data. The NTS is responsible for this. We believe 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 potential incidents.

What data do we use?

• A copy of your identity document to verify your identity.
• We compare your name, date of birth, and Citizen Service Number (BSN) with our records.
• Make other data 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 store from your request:
  • Date of receipt.
  • For which organ you are making the request.
  • Which ID document we have verified.
  • What information we have provided to you.

How long do we keep your data?

• The copy of your ID is deleted immediately after verification.
• Your request is deleted immediately after processing.
• We keep data regarding the fact that you made a request for 7 years after the request was submitted.

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

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

Ask a dietician or physiotherapist for advice if necessary.

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

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

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

• How long do I have to wait?
• Will the organ arrive in time?
• How will things go after the transplant?

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

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

Ask your contact person on the transplant team 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. How exactly that 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 get to the transplant hospital as quickly as possible. It is also possible that an ambulance will pick you up. From the moment of the call, you must not eat or drink anything: you must be fasting for the surgery.

What can also happen: you are called up as a backup

Sometimes two patients are called up for transplantation:

• 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. They sometimes call a backup because, after checking the donor organ, it becomes clear that the organ does not fit 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 many people find it reassuring afterwards to know what to expect during a next call.

In the hospital, a number of examinations take place first. The transplant team makes the final decision on whether you are fit enough for the surgery.

Crossmatch: test for rejection

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

The team usually performs the crossmatch for kidney patients before the surgery. For other organs, the transplant team may decide to proceed with the surgery before the crossmatch results are available. 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 in the hospital. Your loved ones may stay with you while you wait.

Is the donor organ in good condition? Then it must be transported as quickly as possible to the transplant hospital where you are located. This can be done by a special ambulance for organs, or sometimes by helicopter or plane.

The allocation of an organ to a patient on the waiting list happens before the organ is harvested. Sometimes, after the donor's surgery, it turns out that the organ is not suitable for transplantation. In that case, the transplant does not go ahead.

The transplant proceeds if:

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

How the transplant proceeds varies by organ and by hospital. Ask for information from your own transplant hospital.

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

You will receive an explanation of the signs of rejection. If you notice anything, 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. It is a tense time, both for you and for those 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 fellow patients—can help.

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

A transplant—and everything that precedes it—is difficult, both physically and emotionally. Many patients say that their lives have changed permanently. Some actually enjoy life and each other more.

But if you were ill for a long time first and are suddenly able to do much more, that also takes some getting used to. A lot changes for partners and family members as well. Together, you have to find a new balance. It can be good to talk about this before the surgery, 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 Transplant Foundation (NTS) or the organ donation coordinator.

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

More about the thank-you letter