By April Zarifian, ANP, DNS, CNN & Odessa Lynn Pye, BSN, RN

Welcome to the transplant waiting list. Currently, there are 63,000 people waiting for kidney transplants, with an average wait of up to five years. Because you may be on the list for a while, there are things you can do to keep yourself prepared for that exciting call. Your dialysis center and transplant coordinator will help you prepare for your new kidney during the wait.

The List

The United Network for Organ Sharing (UNOS), which maintains the transplant waiting list, is a federally contracted agency that oversees all aspects of organ donation. It is responsible for making rules about organ donation, how organs are given to patients, keeping statistics on transplants in the United States, and assuring all people have an equal opportunity for transplantation. You can visit the UNOS Web site by clicking here.

When a kidney becomes available, the local organ procurement agency enters the donor’s information into the UNOS national computer. The UNOS computer then considers everyone on the list. Candidates are chosen by blood group (must be the same as the donor), matching HLA types (white blood cell type), antibody level, and amount time on the list. Points are assigned for each category, and persons with higher antibody levels are given more points because these candidates have a harder time getting a kidney that will crossmatch negative. Cross-matching is a blood test performed before the transplant to indicate how the recipient will react to the donated organ. If the crossmatch is positive, the donor and recipient are incompatible. If it is negative, the transplant may proceed. If no one in the country has a perfect match for this donor, the kidneys will then be used in the donor’s local area. The local list will give all the eligible candidates from number one (person with the most points) to the bottom of the list. Candidates one through five will be called to test for the kidney.

Your transplant center will be called with the donor offer. Upon reviewing the donor’s information and talking to your nephrologist, your surgeon will decide if this is a good kidney match for you. Your transplant coordinator will then call you to come to the center to prepare you for the surgery. The final test will be the HLA cross-match. White blood cells from the donor will be mixed with the serum (liquid portion) of your blood. If the cells live in the serum, the crossmatch is negative and you can receive this kidney.

When you arrive at the transplant center, you will be one of five people tested for the kidney. The kidney will be used in the order you are on the list. This is important to decrease the time the kidneys are on ice after they are removed from the donor. You may be called several times before you finally get that kidney. It is important that you go to the center even if you are number five. Those ahead of you on the list may have positive crossmatches or have medical reasons to prevent them from receiving the kidney.

The Call

When you get that important kidney call, be prepared to go to your center. You may want to have a “dry run” to assure you have everything in place for the real thing. Things you should take with you are an overnight bag with personal items (toiletries, clothes, a book, etc.) to the hospital. You should also bring all your medications and, if you are on peritoneal dialysis, many centers ask you to bring your supplies. Do not forget your glasses or hearing aids.

Have a plan for reliable transportation to and from the center. It is wise to have a backup in case of car problems. If transportation is an issue for you, the social worker at your dialysis unit or the transplant center can help. Some strategies that have worked for patients are agreements with family members where you might pay for gas. In addition, church or club members can be valuable resources, and local law enforcement agencies may be very helpful. The most important thing is to make this plan and keep it up to date as you wait.

The Wait

Because you will probably be on the list for a while, you must take responsibility for your health so you will be in good shape when the call comes. This includes keeping your dialysis schedule, doctor appointments, and taking your medications faithfully. If you have health problems, let your doctor know early so he or she can help you. Taking action to correct a problem early can prevent complications. Things you can do to stay healthy are follow your diet, have an exercise schedule, and keep a positive attitude toward your health. If your unit or transplant center has a support group, take advantage of this resource. Support groups provide a place to meet other patients with similar problems and professionals who can provide information and counseling.

Let your transplant center know if you change your address or phone number. You were asked to provide this information when you were listed. This is the only way they can find you when a transplant becomes available. Many centers send reminders every few months. You should also let your center know of any changes in your insurance information so it is up to date when you go to the hospital.

Your dialysis center and nephrologist can help you keep the transplant center informed about your status. They will be sending blood to the transplant center on a regular basis for antibody testing. Many centers take this opportunity to ask if you were hospitalized or needed a blood transfusion. This information is returned with the blood sample. If you have been in the hospital, call your transplant coordinator and tell her what the problem was and any changes in your routine. If you are unable to do this, have a family member call. This will not affect your status on the list but may mean you could not get a kidney during this period.

Many transplant centers have nurse coordinators (list management coordinators) who are responsible for maintaining current information of the patients on the list. This nurse may call you to see how you are doing. These coordinators may also schedule you to come back to the center for yearly updates. This is an opportunity for the transplant center to be sure you are ready. You will have a new history and physical examination, see the social worker and financial counselor, and have some updated testing. The tests will be determined by your transplant surgeon. If you have heart problems, you may have a new stress test or see the cardiologist. This is your opportunity to ask your transplant team any questions you may have.

Waiting for a transplant is a relationship between you, the transplant center and your nephrologist. You are the most important part. Staying healthy, doing your dialysis regularly, and keeping your appointments with your nephrologist ensure you will be ready when that call comes. Your healthcare team knows waiting for a transplant is difficult, but with everyone doing his or her part, you will be prepared when that important phone call comes.

April Zarifian, ANP, DNS, CNN, is an adult nurse practitioner with the Tulane Center for Abdominal Transplantation in New Orleans. She is involved in pre-transplant and post-transplant care of kidney transplant and kidney-pancreas transplant patients.

Odessa Lynn Pye, BSN, RN, is the waiting list coordinator for the Tulane Center for Abdominal Transplantation. Her areas of expertise include kidney transplant and kidney-pancreas transplant.

This article originally appeared in the July 2005 issue of aakpRENALIFE, Vol. 21, No. 1.

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