While Waiting

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Completing your transplant evaluation and being placed on the waiting list can take a huge amount of time and effort. The time you spend on the waiting list can also be challenging. 

How long will I be on the waiting list?

Most people will spend 3 years or more waiting for a kidney transplant. Your waiting time may vary for many reasons, such as:

What should I do while I’m waiting for my transplant?

While you are on the waiting list, you need to stay healthy. This means staying medically, surgically, and mentally a good transplant candidate. 

This can be hard, but there are several things you can do to keep yourself healthy and ready for a transplant, such as:

• Keep a good functional status
• Keep a healthy body weight
• Keep a positive attitude
• Communicate with your transplant center

Having an unacceptable functional status or body weight are 2 of the most common reasons people are put on hold or taken off the waiting list.

Keeping a good functional status

Functional status is your ability to:

• Do normal daily activities to meet your basic needs
• Handle your typical responsibilities
• Stay healthy

Transplant centers often consider things like how far you can walk, if you can go up and down stairs, and if you can shop and cook by yourself. 

Be active

The best way to maintain a good functional status is to be as active as possible. This means walking a distance each day that your transplant care team recommends. If you can run, ride a bicycle, or swim, do so as often as you can. You should try to be active for 2 and a half hours a week, or about 30 minutes a day, 5 days a week. 

Do strength training

You should also do strength training. When you have end-stage kidney disease (ESKD) and are on dialysis, you may lose muscle and bone mass. You can do resistance exercises, such as squats or push-ups, with your body weight alone or with weights. These exercises can help you keep your muscle mass, which will improve your functional status. 

Here are some resources to help you stay healthy:

• Exercises you can do depending on your level of fitness:
  • “Let's Get Active! Exercise for Kidney Patients” by the Nation Kidney Federation
• Eating well:
  • “Nutrition Goals Before Transplant” by the University of Michigan 
  • “Your Weight Before & After Kidney Transplant” by the National Kidney Foundation
  • “Nutrition Before Your Transplant” by MyHealth.Alberta
  • “Managing kidney disease through lifestyle behaviors” by the American Kidney Foundation

Keeping a good functional status also helps improve your blood pressure and blood sugar control, and lowers your chance of heart disease.

Keeping a good body weight

Getting and keeping an acceptable body weight is important for a successful transplant. Extra weight, especially around your belly, may raise the chance of something going wrong with your transplant surgery. 

Keeping a healthy weight can be hard. For many people with ESKD, their disease, income, dialysis, work, and family commitments do not leave a lot of time to focus on their weight. 

There are ways to lose or stay the same weight to stay active on the transplant waiting list, such as:

• Regular exercise
• Eating a healthy diet, with a balance of protein, vegetables, and whole grains, which can be done on almost any budget
• Meet with a dietitian from your dialysis unit or transplant center to help you make a meal plan that works for your budget, lifestyle, and tastes

Keeping a positive attitude

It can be very hard to keep a positive attitude while waiting for a transplant. It can take a long time to get a transplant, and a lot of things can happen to you medically while you wait. People may have new medical diagnoses, multiple interventions on their dialysis accesses, hospitalizations, and other setbacks.

Here are some ideas to help you:

• Try to keep a strong support network of family and friends who can help you through the process
• Tell your transplant center if you have any feelings of anxiety or depression. These feelings are very common in people with ESKD. Transplant centers have psychologists, psychiatrists, and social workers who can help you and find resources for you. 
• Try finding a peer mentor, which are people with ESKD who are also waiting for a transplant or have gotten a transplant. Peer mentors often understand what you are going through even more than your transplant care team. They can give you tips on how to stay positive and engaged while you wait for your transplant. Many transplant centers have a group of peer mentors.

Communicating with your transplant center

Finally, communication is key. Keep your transplant center updated on any changes in your contact information, health, support, transportation, or insurance. This will allow your transplant center to help you make a good plan for a successful transplant