What is the transplant list (=waiting list)?
Since the demand for a kidney transplant outweighs the available kidneys in most countries, many countries have a transplant list. If a living donation from a closely related person is not an option for you, you can ask to be put on the waiting list. By doing so, you initiate the possibility of receiving a kidney donation from a deceased person (=post-mortem) in the future.
Who is Eurotransplant?
The non-profit transplant organization "Eurotransplant International Foundation", based in Leiden, the Netherlands, is responsible for the allocation of organs to be transplanted in Austria, Belgium, Croatia, Germany, Hungary, Luxembourg, the Netherlands and Slovenia. This international organization makes it possible for available organs from all participating countries to be transferred and transplanted as quickly as possible to a suitable recipient in one of its member countries.
How does the transplant list work?
The transplant list is everything but easy to maintain. After all, Eurotransplant has to try to understand which donated kidney has the lowest probability of rejection for which patient. Apart from that, the list is based on an open, transparent, and above all ethically and morally justifiable points system for organ allocation. The longer you have been waiting, the higher you move up the list. But you also have to make sure, that you don't miss any necessary examinations in order to always be active.
Waiting list in Germany
As in many countries, there is a waiting list in Germany for all transplantable organs. This means that there are more patients who need a donor organ than available organs. There are usually several thousand people on the German waiting list for kidney donation. Your place on the waiting list depends, among other things, on a point system. It is therefore based on objective guidelines of the German Medical Association. The points credit for example the medical urgency as well as your chances of success of a transplant. As mentioned, Germany is part of the organisation "Eurotransplant International Foundation". Unfortunately, the average waiting time for a kidney in Germany is about 7-10 years. So even if you are interested in a kidney transplant, some years on dialysis will be inevitable.
Waiting list in other countries, example: Austria
In other countries, such as Austria, France or others, there is also a legally regulated waiting list for transplantable organs. However, since in those countries, the right of objection applies, everyone is automatically an organ donor. If someone prefers not to be one, the opt-out regulation can be activated by registering for objection with the Federal Institute for Health Care. Everything else is usually quite similar - the ranking on the waiting list, the point system. As a result of the opt-out regulation, the waiting time for a kidney in a country like Austria is "only" about 4-6 years compared to Germany. As you can see, wait times may vary strongly from country to country.
So how do I get on "the list"?
If you decide that you want a transplant, you first have to undergo a time-consuming series of examinations in order to clarify your prerequisites in advance. You should stop smoking if you are a smoker and in some cases, you may be asked to lose weight. Some of the examinations happen once, others you will have to do regularly to stay on the list.
Your nephrologist and you will jointly have to work through a series of checkups that the transplant center will ask for (your nephrologist will have a complete checklist of to-do's):
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Surgical fitness
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ECG; stress-ECG and, if you have previous heart problems, cardiac catheter examinations
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Urological checkups
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Exclusion of chronic inflammations
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Special laboratory tests, e.g. tissue typing
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Exclusion of tumours
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…
The important thing is: you have to have fully completed your examinations - only then does the waiting list clock start ticking!
What can be reasons for not making the waitlist?
Unfortunately, there are also reasons why it is more difficult to be placed on the waiting list. These include, for example:
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Tumor diseases that are no longer treatable
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Consistently recurring infections
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Risky secondary diseases e.g. severe cardiovascular diseases, liver diseases, lung diseases
Similarly, there are limiting factors that do not preclude a list position but are also considered:
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Advanced age
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Cancer
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Hepatitis B or C
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Overweight
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Addiction
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Psychosocial problems
I want to get my name onto the waitlist - what do I need to do?
It's important to discuss this with your nephrologist first. Your dialysis team will discuss your health situation with you and help you coordinate tests and paperwork.