In this series of articles, two patients John and Jenny (aliases) will share their personal patient journey with us. We are very thankful for sharing their personal experiences and it sheds some light on the broad spectrum of kidney disease. This part focuses on the time from registration on transplant waiting list, receive the donor organ, the actual surgery, and recovery after transplantation until hospital discharge.

Furthermore, thanks to the contributing experts from our partners for their input for this article: Dr. Marcel Naik (Charité), Aadil Rasheed (HPI), Dr. Mozhgan Bayat (HPI), and Dr. Matthieu-P. Schapranow (HPI). Images by Elf moondance, National Cancer Institute.

Registration at the transplant center

A nephrologist will refer a patient to a  kidney transplantation center. During the registration at the transplantation center, all upcoming procedures and regulations are explained to the patient. Transplantations are strictly regulated by law, e.g. in Germany by the Transplantationsgesetz (TPG).  Afterwards, evaluation diagnostics are performed to assess feasibility of a transplantation and to maximize the positive benefit of this endeavor. Amongst others, the diagnostics assesses surgical aspects, the risk of infections or cancers for the patient as well as general fitness of a patient. Furthermore, existing comorbidities will be evaluated, e.g. severe arteriosclerosis, infectious diseases, cancer disease. In case of an organ donation from a family member or other living donor, the donor needs to undergo extensive evaluation comparable to the the patient.

Living and non-living organ donation

In Germany, the following types of organ donation are allowed:

  1. Donor organs by living donors, e.g. personal relationships, family members, close friends or
  2. Donor organs from deceased or confirmed brain-dead donors.

In addition, it is possible to receive a donor organ from donors, who encountered a recent cardiac arrest in Canada, but not in Germany, yet.

Living organ donation has with multiple advantages compared to non-living donations. For example, the compatibility of the donor organ and recipient can be evaluated without timely restrictions. Thus, eventual risks for both donor and recipient can be detected in advance. Furthermore, the transplantation surgery can be planned for a certain date without the need to start surgery at night. The life expectancy of a transplant patient is higher when the donor organ comes from a living donor. Average life expectancy of a transplant organ is approx. 20 years in the case of a living donor compared to approx. twelve years for a non-living organ donation. Major disadvantage of a non-living donation is the long and unknown waiting time to receive an appropriate donor organ, which sometimes lasts multiple years. Once all evaluation exams are done, the recipient is registered on a waiting list. Therefore, patient specifics are submitted to the identify best-matching donor organs, e.g. blood group, immunological specifics, age, gender, date of first dialysis.

German kidney transplant programs

The allocation of donor organs is done either by a national organ donation association, e.g. in Germany “Deutsche Stiftung Organspende”, DSO, or by a multinational program, e.g. Eurotransplant. A multinational program will take care of combined national waiting lists. In case of kidney transplantation, Eurotransplant runs the following allocation programs:

  • Acceptable Mismatch Program (AM),
  • Eurotransplant Kidney Allocation System (ETKAS), and
  • Eurotransplant Senior Programme (ESP).

Patients registered to the waiting list get organ offers via such allocation programs dependent on specific characteristics of both patients and donors. AM is designed to provide highly immunized patients, e.g. due to pregnancy, previous transplantation or transfusions, well-suited organs within a reasonable waiting time. This is achieved by allocating donor organs first to AM patients. If no matching patient is found, the donor organ is allocated through ETKAS, which – amongst others – considers waiting time, blood group, distance between donor and patient transplant center, HLA match grade, and medical urgency. Alternatively to that, the ESP was established specifically for elderly patients and donors (> 65 years). It prioritizes short transport time of the donor organ over immunological matching of recipients and donors. Especially for elderly patients with reduced immune response, this is a beneficial trade-off.

Transplantation day: Getting ready for the donor organ

Photo by National Cancer Institute

In case of living donation, the last dialysis is scheduled for the day before the surgery. On the transplantation day, the patient is ordered to the hospital and after medical checks the narcosis is initiated once the donor organ is already extracted. One surgery team prepares the extraction of the kidney whilst another surgical team is preparing the transplantation on the recipient. Cold-ischemia time is usually below four hours, i.e the time the donor organ remains outside of the human body. The donor organ is taken to the transplant site, where the selected recipient is already prepared for surgery to minimize cold-ischemia time. Once a potential donor was identified, her/his  immunological data is analyzed and Eurotransplant investigates the best match on the list taking multiple factors into account. Taking immunosuppressants is already initiated right before surgery. About two thirds of kidney transplants start working as expected after all vessels and the ureter are connected to the donor organ. The remaining third may have delayed graft function and starts working some hours after the surgery completed.

Post-operative care focuses on daily ultrasound examinations assuring correct urinary and blood flow in the donor organ. Furthermore, water levels and urine output is checked regularly. Medication that were required during dialysis can be stopped, special medications to avoid infections and graft rejection will be started. Most patients, who did not have any urine before transplantation, have to visit restrooms every two hours after transplantation because the bladder has shrunk.

A living donor organ for Jenny

Jenny: ”I woke up very early on the day of the kidney transplantation and felt a little anxious and nervous, but also excited. Thanks to my mother’s generous decision to donate her kidney to me. She was taken to the surgery room about 90 minutes before it was my turn. Luckily, my husband and my father were allowed to be with me the whole time and accompany me until outside the pre-operating room. After we said our goodbyes, I felt completely calm, knowing that nothing can change what was going to happen now. While being prepared for the surgery, I was told that my mother’s surgery had already started and that everything was going as planned. The surgeon came and asked me, what kind of surgery they were supposed to do and which kidney and where it should be transplanted. This is a safety mechanism to ensure that everything goes according to plan. The next thing I can remember is waking up on the ICU, hearing my husband’s and my dad’s voices. But I thought of my mother first and asked how she was. Everything was fine! I felt extremely tired, but I was not in any pain. The nurses told me that my new kidney has started working properly and that it had already excreted 10 liters of fluid. This seemed unbelievable to me, but I felt indescribably happy. And I was so very thirsty! After one night on the ICU, my blood creatinine levels kept decreasing and I was transferred to normal nephrology ward. Although my mother was in another ward, the staff arranged that she was brought to my room in her bed for a short visit. The reunion was very emotional for both of us. I was overwhelmed to see my mother well. She has donated me a second life!

A non-living donor organ for John

John: ”I dialyzed for almost nine years at the Charité and I finally received the call for a kidney transplant! The doctor on duty told me that I should pack up a few things to go to the hospital immediately. At the transplant center, I was greeted by the doctor on duty, who had also called me earlier. He explained to me all the upcoming procedures. It started with health examinations: a blood sample, a lung x-ray, an EKG, and a small, and also up-to-date CT scan was done in the emergency room. After examinations completed, I received an extra dialysis for the next three hours. I walked into the surgerey room and after a short conversation, whether there was anything new in the anesthesia sheet, I gave consent for surgery. I remember waking up in the recovery room at 8.30 am. Sonography of the new kidney was performed every two or three hours. Because my potassium level after the surgery was too high, I received dialysis after surgery. A few hours later, I was transferred to the urology department. The first 13 days of my hospital stay were very tough, because my body did not produce any urine. Therefore, my doctors need to get a biopsy of my new kidney seven days after the transplant to see whether my body might begin to reject the kidney; a second biopsy was to taken at day 15. Nonetheless, I had a good feeling that everything would be fine and finally the urine ran after 13 days. I was discharged after a total of 22 days after the surgery.

The NephroCAGE consortium

The German Canadian consortium NephroCAGE combines medical and scientific-technical expertise from Germany and Canada. We jointly create a decentralized clinical prediction model that tests the added value of the latest artificial intelligence (AI) techniques on kidney transplantation patients in different transplant centers within Germany and Canada. Our clinical prediction models aim to support nephrologists in identifying post-transplant risks, e.g. risk for rejection. Amongst others, we incorporate donor specifics, such as gender, age, donation type, cold-ischemia time and a HLA matching score as important factors for prediction of risk factors in our clinical prediction models.

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