Once your pretransplant evaluation is completed, the multidisciplinary Rush Pancreas Transplant Care Team will review your evaluation. If you meet Rush's criteria for pancreas transplant, you will be placed on the waiting lists for a donor pancreas (and kidney, if you are receiving a dual transplant). The lists are maintained by Gift of Hope (Illinois' organ bank) and the nationwide United Network for Organ Sharing (UNOS).
Transplants from deceased donors are from donors who have registered to be organ donors while still living or whose family gave consent to organ donation. Rush has been an active participant in both local and national organ-sharing programs for nearly 30 years. The pancreas surgical team at Rush is available on a 24-hour basis to respond to offers of organs for our patients. Many of the deceased donor organs come through Gift of Hope, but organs may come from anywhere in the United States.
Organs are distributed fairly to patients waiting on the donor list. The allocation of organs depends on such factors as whether you and a potential donor have the same blood and tissue type, the time you have been on the waiting list, and the presence of antibodies in your blood that could cause your body to reject the transplanted organ.
It is difficult to predict how long you will have to wait for a suitable donor organ. Most patients wait one to two years for a well-matched kidney-pancreas transplant, with shorter waiting times for pancreas-after-kidney transplant. If you have an unusual blood type or very common tissue-typing antigens, you may have a shorter wait. If you have had many blood transfusions, you may have a longer wait.
Some people choose to be listed at more than one transplant center, but it does not guarantee that you will receive a transplant sooner. Gift of Hope only allow patients to be listed at one transplant center in Illinois. If you want to investigate being listed at multiple centers, you should contact your insurance company to see which other centers might be an option.
Patients may transfer their primary waiting time from one transplant center to another center. Transferring centers may be necessary for a number of reasons, like a change of insurance.
Preparing for Transplant
No matter how long you are on the waiting list for a donor, there are certain things you need to do to prepare for when your donor organ(s) becomes available. Once you are on the list, please take steps to prepare for your transplant in the following areas:
- Child care — Arrange for someone to care for your children (or other family members) during your transplant procedure and subsequent hospital stay, which typically lasts four to seven days. Your donor organ(s) may become available at any time, day or night, and you will have to come to the hospital immediately afterwards. Therefore, it is important to make arrangements in advance for who will take care of your family in your absence.
- Transportation — Arrange transportation to and from the hospital for both your transplant and your follow-up visits.
- Insurance benefits — Understand your insurance benefits, especially your co-pays, deductibles and prescription coverage. Your prescription plan may have a 90-day mail order option that would save money. Determine whether you have medical leave or short-term disability benefits and complete the paperwork needed to receive them.
- Communication — Keep in touch with your transplant nurse coordinator on a monthly basis. Let the nurse know of any changes in your condition — they might make you eligible to receive your donor organ(s) more quickly. In addition, let the nurse know if you move, change or add phone number(s), change dialysis centers, go on vacation, change insurance, are admitted to the hospital, have an infection that requires antibiotics, or have a transfusion. As you think of questions, call your team to discuss them.
- Wellness — Work with the dialysis staff to maximize your health, including maintaining a proper diet and exercising to the best of your ability. The healthier you are before surgery, the faster your recovery period may be.
- Advance directives — Prepare a living will stating your wishes regarding the medical treatment you wand to receive or refuse if you become unable to make treatment decisions, unconscious for an indefinite period or dependent on others for care. Or designate someone with power of attorney to make these decisions on your behalf.
- Emotional health — Waiting for a transplant can be very stressful for patients and families. Develop your support system. Talk with friends and family about what you are experiencing. Consider attending a support group and/or writing in a journal about your experiences. If you are feeling overwhelmed by your feelings, contact the social worker on the transplant team.
Above all, live your life. The wait for your donor organ(s) can last several years. Don’t wait until you have a transplant to live your life to its fullest.