The List and the Wait
“The List” is the national Organ Procurement and Transplantation Network list of people needing donor organs. Every person waiting for a donor organ is registered with the Organ Procurement and Transplantation Network (OPTN), which maintains a centralized computer network linking all regional organ gathering organizations (known as organ procurement organizations, or OPOs) and transplant centers. The United Network for Organ Sharing (UNOS), a private nonprofit organization, administers OPTN under a contract with the Federal Government.
Your transplant coordinator will contact you by phone and/or correspondence to inform you that you have been placed on the transplant list. ONLY after you receive such correspondence are you officially on “The List.” Of course, you have the option to refuse transplantation at any time.
After you are placed on The List, any potential living donors can begin their screening process. Your transplant coordinator can help with explanations and information as well as coordination with your living donor(s)’ primary care physician(s).
UNOS rules allow patients to register with multiple transplant centers (called “Multiple Listing). Multiple Listing means that you are registered on the waiting list of more than one Transplant Center. It is possible that multiple listing may increase your chances of getting an organ offer earlier. Discuss this option with your Transplant Team. Ultimately, it is up to the specific Transplant Center to decide whether to accept you for multiple listing and it will most likely involve another full evaluation by their team. Check with your Insurance Company first to be sure that they will cover the additional testing.
Once you’ve been placed on the transplant list, you begin a period of waiting to be matched with a donor. Because there are many people waiting, and a serious shortage of donor organs, the waiting period can be quite long. It can range from several months to several years. There really is no way to predict how long your wait will be, and there is no such thing as “the top of the list.” The order of the list changes with every kidney that becomes available and is dependent on blood type, tissue type and crossmatching results. The length of time you may wait will depend on your blood type and crossmatch reactivity to individual donors.
For statistical averages of waiting times for each type of organ, visit www.unos.org.
Things to Do While You are Waiting
Of all the stages in the transplant process, the waiting period is perhaps the most challenging. While you are waiting for your match is the perfect time to take care of a whole host of preparatory details. For example, develop a financial plan and a family support plan for when you are in the hospital and when you are recovering at home.
Be sure to stay healthy and active. Talk to your Transplant Coordinator and primary care physician about diet, exercise and what you can do to stay as fit as possible. Here are a few self-care steps you can take to keep yourself healthy:
Patients who are better nourished generally have fewer complications, spend less time in the Intensive Care Unit after surgery, and have a shorter recovery time. In addition, good nutrition combined with an exercise program helps you maintain a reasonable quality of life during the waiting period. It’s recommended that all patients follow a low-salt diet to help prevent fluid from building up. You may also need to adjust your energy level and protein intake to prevent undesirable weight changes or muscle loss. The Transplant Dietitian is available to help assess your food habits and suggest strategies for symptom management together with general nutritional advice.
Physical fitness is very important as you wait for your kidney transplant. It is difficult to remain active when you’re feeling poorly, but this must remain a priority. Patients who are in better condition generally have shorter recovery times and fewer complications following surgery. “Working out” at a gym may be unrealistic. Light exercises, such as lifting cans of soup or small weights, are good ways to get exercise done at home.
While on the waiting list, walking is the best exercise to maintain your health and fitness. You can start by going for a 5-10 minute walk outside or in a nearby shopping mall. Aim to increase the time you spend walking by one minute every day that you walk. Your ultimate goal is to walk for 30 minutes, 3 times each week. Try to walk at a pace that gets you slightly short of breath, but still able to talk. This level of activity is generally safe for people with health problems, including heart and kidney disease. Don’t walk immediately following a big meal, or on days that are extremely cold, hot or humid. Stop exercising if you feel dizzy, nauseated, or unusually short of breath.
Maintaining your physical health is important before transplantation. You’ll benefit physically and mentally by keeping your body in good shape. Try your best to fit exercise into your daily routine by getting your family and friends to join you. Perseverance now will pay off later. Please remember that you must consult your Transplant Team and your Primary Care Provider before starting any new exercise program.
Keep Your Medical Appointments
Continue to see your local doctor or specialist who can also communicate with our Transplant Team in order to provide you with the best care. Please remember that you or a family member must inform your Transplant Coordinator of any admission or discharge from the hospital. The waiting period during the transplant process can be a difficult time. Clear, direct, and honest communication among all family members will help reduce frustration, stress and tension. If you or your family experience significant difficulty with coping during the waiting period, please get help from a local, qualified health professional or contact the Transplant Team’s Social Worker.
You should also pack a bag and prepare a plan for getting to the hospital and contacting family members.
Stay connected with the Kidney Transplant Team while you are waiting for your transplant. You have routine check ups and receive immunizations and vaccines every six to eight weeks to help keep you healthy. Your Transplant Coordinator provides you with a schedule of appointments. It is important that you follow this schedule. Always call your Transplant Coordinator to report any illness, changes in health or hospitalization.
It is important to stay in close contact with your Transplant Team during this time. Be sure they are informed of any health changes because your health affects your ability to have a transplant. Let your Transplant Coordinator know about any trips you take out of town so the team will be able to locate you if an organ becomes available.
You are welcome to attend any of the many Kidney Transplant Support Groups to meet other people going through similar experiences. Learning as much as you can about transplantation will help you decide whether kidney transplantation is a good treatment option for you. If you know what to expect, you will feel better and more comfortable throughout the process. Your Transplant Coordinator can help you find a support group close to home.
Finally, be prepared. If you are waiting for a donor organ (as opposed to a live donor organ), your organ may arrive at any time. Because you never know where you will be when you get “The Call,” it is important to always be ready. Remember, it is your responsibility to be available when a donor organ becomes available. The Transplant Team must have a list of contact phone numbers for you so they can reach you 24-hours a day. Carry your beeper with you at all times. Keep your cell phone with you (even when sleeping) and be sure that the ringer is always turned on. Update the Kidney Transplant Team if you go on a trip. Your place on the waiting list may be jeopardized if we cannot reach you.