Deceased-Donor Renal Transplant Information for patients

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Deceased-Donor Renal Transplant Information for patients Exceptional healthcare, personally delivered

As part of the work-up for the NHS Blood and Transplant (NHSBT) kidney transplant waiting list, you will be asked to sign a consent form. This asks you to indicate whether you are happy to receive offers of any potential kidney, or if you would prefer to be more selective about the kind of kidney that is acceptable to you. This leaflet aims to explain what these choices mean, to help you make an informed decision that is right for you. What do I need to know about deceased-donor transplant? A deceased-donor transplant is when a kidney for transplant comes from a person who has died. A kidney is only removed from a donor if, before they died, they had agreed to donate it (for example, they may have registered to be a donor and carried a donor card, or their next of kin may have consented to organ donation after the person s death). There are two types of donor in this situation: n DBD (Donation after Brain Death) also known as Heart Beating Donor n DCD (Donation after Cardiac Death) also known as Non Heart Beating Donor DBD (Donation after Brain Death) DBD donors are people who have suffered permanent and irreversible brain injury, but their heart continues to beat, and they are being kept alive artificially by a life-support machine. Once tests confirm irreversible brain injury and the patient has been certified dead, the donor is taken to the operating theatre for retrieval of the kidneys whilst the heart is still beating. This means that the kidney spends as little time as possible without a blood supply; it is expected that the kidney will function soon after being transplanted. The average egfr (percentage efficiency of kidney function) of a DBD kidney is 42. The average time a DBD kidney transplant is 2

expected to last is 12 years. However, this varies from patient to patient and from donor to donor, and is dependent on recipient and donor ages and general health. DCD (Donation after Cardiac Death) DCD donors are people who have died after their heart has stopped beating. In this situation, the heart is no longer beating and the patient is kept on a life-support machine to maintain adequate oxygen levels and blood pressure. This treatment is stopped at least 10 minutes before donation. This means that the kidney spends some time with a reduced or absent blood supply, and as a result there is more likely to be a delay before the kidney starts working (7-14 days). Because of this, the recipient of a DCD kidney may need to have temporary dialysis, a longer stay in hospital, a different anti-rejection drug regime and a greater possibility of requiring biopsy tests on the kidney in the first few weeks. However, the most recent UK data published by UK Transplant indicates that the long-term success rates for DCD donor transplants are the same as those achieved for DBD. Again, this varies from patient to patient and from donor to donor, and is dependent on recipient and donor ages and general health. ECD (Expanded Criteria Donation) Donation is from either DBD or DCD. The donor may have had medical problems that may reduce the chances of good kidney function after transplant, such as high blood pressure or diabetes, or they may be of advanced age. A kidney from such a donor may be slow to start working and for this reason we may need to use a different combination of anti-rejection drugs and doses. A recipient of an ECD kidney is also more likely to stay in hospital for longer and to require dialysis and/or biopsy tests on the kidney in the first few weeks post-transplant. ECD kidneys are carefully considered before being offered to a patient. Only kidneys that meet our transplant centre s criteria 3

are used for transplant. The donor s medical history, cause of death and organ function is evaluated by the transplant consultants before an organ is offered to you. There is no separate data on egfr for ECD kidneys, but such kidneys on average seem to work less efficiently and for a shorter length of time as compared to non-ecd kidneys. This is dependent on donor and recipient medical condition. What should I consider before signing the DBD/ DCD/ECD consent forms? When making your decision, consider the initial disadvantage of having a DCD and/or ECD kidney (ie. longer hospital stay, need for dialysis and need for biopsy tests). In the long term, less than average function is expected from an ECD kidney, but this needs to be balanced against your current health and quality of life on dialysis. Consenting to ECD kidneys will increase the chances of a kidney offer for you, but you may experience more short- and longterm problems if you are transplanted with one of these kidneys. You can decline a kidney offer without it affecting any future offers to you. All offers will be discussed with you. Your kidney consultant and transplant coordinator team will be happy to help and support you to come to a decision that is right for you. What happens when your centre receives a kidney offer from NHSBT? All kidney offers are discussed with at least two transplant consultants (surgeon/nephrologist). If you are a Dorset, Exeter or a Gloucester patient, the offer is also discussed with the consultant nephrologist on call for that area. Offers for children are discussed with the paediatric consultant. 4

frequently asked questions Frequently Asked Questions DBD (Deceased after Brain Death Donation or Heart Beating Donor) DCD (Deceased after Cardiac Death Donation or Non Heart Beating Donor) ECD (Expanded Criteria Donation) Definition Donation occurs after brain death has been confirmed in the donor. Treatments to maintain adequate oxygen levels and blood pressure are continued until donation. Donation occurs after the heart and breathing have stopped in the donor. Treatments to maintain adequate oxygen levels and blood pressure are stopped at least 10 minutes before donation. Donation is either DBD or DCD. The donor may be of advanced age or have complex health issues that may reduce the chance of good kidney function after transplant, eg. high blood pressure or diabetes. Hospital Stay Average length of stay in hospital is between 5 & 10 days. Average length of stay in hospital is between 11 & 16 days. Average length of stay in hospital is between 12 &17 days. Ongoing treatment plan You will be started on anti-rejection drugs on the day of the operation. The kidney usually starts to work immediately, but you may need dialysis for a short time if it does not. You will be started on anti-rejection drugs on the day of the operation. The kidney does not usually start to work immediately after the operation, and you may need dialysis for 1-2 weeks after transplantation. You will be started on anti-rejection drugs on the day of the operation. The kidney does not usually start to work immediately after the operation, and you may need dialysis for 1-3 weeks after transplantation. 5

Frequently Asked Questions DBD (Deceased after Brain Death Donation or Heart Beating Donor) DCD (Deceased after Cardiac Death Donation or Non Heart Beating Donor) ECD (Expanded Criteria Donation) How well will the kidney work? This varies from patient to patient and from donor to donor, and is dependent on recipient and donor ages and general health. The average egfr (the percentage efficiency of kidney function) is 42. This varies from patient to patient and from donor to donor, and is dependent on recipient and donor ages, general health. The average egfr is 41. This varies from patient to patient and from donor to donor, and relates mostly to the complex medical history these donors have. On average, such kidneys will work less well than DBD or DCD kidneys. How long will the transplant last? 96% kidney survival at 1 year; 89% kidney survival at 5 years; 70% kidney survival at 10 years. The average time for DBD kidney transplant to last is 10-14 years. * Survival time is dependent on how fit you are and what other medical problems you have. 92% kidney survival at 1 year; 86% kidney survival at 5 years; 68% kidney survival at 10 years. The average time for DCD kidney transplant to last is 10-13 years. * Survival time is dependent on how fit you are and what other medical problems you have. There are no separate records for these kidneys. The kidney survival would be expected to be less than DBD and DCD. 6 These figures are averages based on currently available local and national data; individual units may have slightly different outcomes.

References and further information: NHS Blood and Transplant. Available at: www.nbt.nhs.uk [Last accessed November 2013] Data/statistics from NHS Blood and Transplant Activity Report 2012-2013. Available at: www.organdonation.nhs.uk/ statistics/transplant_activity_report/ and local Bristol Statistics for 2009-2011, available at: www.organdonation.nhs.uk/ statistics/centre-specific_reports/pdf/bristol.pdf [Last accessed November 2013] NHS Constitution. Information on your rights and responsibilities. Available at www.nhs.uk/aboutnhs/constitution 7

www.nbt.nhs.uk/renal If you or the individual you are caring for need support reading this leaflet please ask a member of staff for advice. North Bristol NHS Trust. This edition published May 2014. Review due May 2016. NBT002818