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Listing and Waiting

list and waiting 1Patients who have kidneys that function consistently at 20 percent or less of normal, or who are on maintenance dialysis, may begin accruing wait time for transplantation and are candidates for kidney transplant evaluation. The Lourdes nephrology (kidney disease) team evaluates all such patients that it treats or receives as referrals for listing for kidney transplant.

Once kidney function is confirmed and patients have completed pre-transplant evaluation, they are brought for discussion for the waiting list with the Lourdes’ multidisciplinary kidney transplant team.   This experienced staff comprises transplant surgeons, transplant nephrologists (kidney specialists), transplant pharmacist, nurse practitioner, nurse coordinators, social workers, dietitian, financial coordinator and administrators.   The team reviews whether patients are suitable to be placed on the national waitlist and provides medical approval to patients who are appropriate for the list.

More than one hundred thousand Americans are waiting for kidney transplants.  

Assessment for this list may require additional testing.   In cases where a patient’s condition is likely to change, candidacy for evaluation and listing may be reconsidered at a later time.   Transplant centers vary on acceptance criteria for transplant recipients; therefore, if a patient does not meet selection criteria at a center, he or she should seek other transplant programs. Insurance coverage may impact where and if patients can be evaluated.

When the Lourdes program obtains insurance approval for the medically accepted patient who has met criteria for a kidney transplant, it then places the patient on the kidney transplant list.   The staff notifies patients by phone and by mail to confirm the official date their placement on the list.

Once a patient is accepted to the transplant list, Lourdes transplant nephrologists and transplant surgeons work with coordinators at Lourdes Regional Organ Transplantation Center and the United Network of Organ Sharing (UNOS) system to match the patient with an available donor organ (for those who do not have a family member or friend willing to donate a compatible kidney to them, and who will therefore avail themselves of a deceased, anonymous, or paired donor organ).  UNOS maintains a national list of organ transplant candidates. However, finding enough donor organs for transplant candidates remains a major challenge nationwide.

Currently, the waiting time for selection from the list for kidney transplant is based on blood type and how long an individual has been on the wait list.   Waiting time varies based on geographic location.   At present in the South Jersey/Greater Philadelphia/Delaware Valley area, the wait averages between five to seven years.

Beginning in 2015, the rules for kidney allocation will change.   Patients who are not yet on dialysis but who meet the listing criteria will still have the benefit of accruing wait time.   However, patients on dialysis will have an accrued wait time based on the date that maintenance dialysis began.   Currently, listed patients will not lose any wait time, and if they were listed after their dialysis start date, additional wait time will be gained accordingly.

Transplant candidates may be listed at more than one transplant center, a status known as “multiple listing.”  Rules governing organ donation and listing services permit this status for patients as long as the centers that the patients are listed at are affiliated with different procurement organizations. This increases the opportunities to receive an organ.    For that reason, patients can be listed with both Lourdes, which is affiliated with the Sharing Network, as well as any of the Philadelphia hospitals that provide transplant services, which are affiliated with the Gift of Life organization.   Most patients do have the ability to multi-list, however, some insurance companies may designate where patients can be listed.

For all those accepted to the list, the Lourdes team guides each individual on important care points and considerations during the waiting period:

  • The team re-evaluates patients every one to two years while they are on the wait list.
  • Patients have blood drawn every month to test for antibodies.
  • Listed patients should ensure that the nurse coordinator can easily contact them during the waiting period and should update the coordinator on any significant changes in health status.
  • Notifications about hospitalizations, surgeries, new medications (such as blood thinners), blood transfusions and relocations or changes in dialysis center should be reported promptly.
  • It is also important to notify the team of any financial changes that may affect coverage of transplant surgery and/or post-transplant medications as well as changes in insurance.
The  Paired Exchange Program  provides an opportunity to increase the pool of available kidneys, and the possibility to “bring a donor, get a donor” for kidney transplant patients.    Learn more.

When candidates are ill or unable to report to the transplant center, it may be necessary to temporarily inactivate them on the waitlist.   This is not a penalty, as wait time continues to be accrued; it simply means that an individual is unable to undergo transplant surgery at that time.   Patients are then reactivated on the waitlist when suitable.

As many individuals are called for transplant when one organ is available, often patients are called multiple times prior to the time that they go on to actual transplant.   Patients and their family or support persons must remain flexible and on call.

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