How do I start the process of getting a transplant?

Ask your healthcare provider to refer you to a transplant center for an evaluation, or contact a transplant center in your area. Any kidney patient can ask for an evaluation. Click here to learn about transplant centers in Illinois.

How does the evaluation process work?

The evaluation process for a transplant is very thorough. Medical professionals will give you a complete physical exam, review your health records, and order a series of tests and X-rays to learn about your overall health. Everything that can affect how well you can handle treatment will be checked. Your healthcare team will need to know a lot about you to help them—and you—decide if a transplant is right for you. One thing you can do to speed the process is to get all the testing done as quickly as possible and stay in close contact with the transplant team. If you’re told you might not be right for a transplant, don’t be afraid to ask why—or if you might be eligible at some future time or at another center. Remember, being active in your own care is one of the best ways to stay healthy. If someone you know would like to donate a kidney to you, that person will also need to go through a screening to find out if he or she is a match and healthy enough to donate. If it’s your child who has kidney disease, you’ll want to give serious thought to getting a transplant evaluation for him or her. Because transplantation allows children and young adults to develop in as normal a way as possible in their formative years, it can be the best treatment for them. If the evaluation process shows that a transplant is right for you or your child, the next step is getting a suitable kidney. Learn more about the evaluation process here.

What does the operation involve?

You may be surprised to learn that your own kidneys generally aren’t taken out when you get a transplant. The surgeon leaves them where they are unless there is a medical reason to remove them. The donated kidney is placed into your lower abdomen (belly), where it’s easiest to connect it to your important blood vessels and bladder. Putting the new kidney in your abdomen also makes it easier to take care of any problems that might come up. The operation takes about four hours. You’ll be sore at first, but you should be out of bed in a day or so, and home within a week. If the kidney came from a living donor, it should start to work very quickly. A kidney from a deceased donor can take longer to start working—two to four weeks or more. If that happens, you may need dialysis until the kidney begins to work. After surgery, you’ll be taught about the medicines you’ll have to take and their side effects. You’ll also learn about diet. If you’ve been on dialysis, you’ll find that there are fewer restrictions on what you can eat and drink, which is one of the benefits of a transplant.

What are anti-rejection medicines?

Normally, your body fights off anything that isn’t part of itself, like germs and viruses. That system of protection is called your immune system. To stop your body from attacking or rejecting the donated kidney, you will have to take medicines to keep your immune system less active (called anti-rejection medicines or immunosuppressant medicines). You’ll need to take them as long as your new kidney is working. Without them, your immune system would see the donated kidney as “foreign,” and would attack and destroy it. Anti-rejection medicines can have some side effects. It is important to talk to your healthcare provider about them, so that you know what to expect. Fortunately, for most people, side effects are usually manageable. Changing the dose or type of medicine can often ease some of the side effects. Besides the immunosuppressive medicines, you will take other medicines as well. You will take medicines to protect you from infection, too. Most people find taking medicines a small trade for the freedom and quality of life that a successful transplant can provide.

• Learn more about immunosuppressant medicines
• Learn about the types of immunosuppressant medicines

What happens after surgery, when I go home?

Once you are home from the hospital, the most important work begins—the follow-up. For your transplant to be successful, you will have regular checkups, especially during the first year. At first, you may need blood tests several times a week. After that, you’ll need fewer checkups, but enough to make sure that your kidney is working well and that you have the right amount of anti-rejection medication in your body.

What if my body tries to reject the new kidney?

One thing that you and your healthcare team will watch for is acute rejection, which means that your body is suddenly trying to reject the transplanted kidney. A rejection episode may not have any clear signs or symptoms. That is why it is so important to have regular blood tests to check how well your kidney is working. Things you might notice that can let you know you are having rejection are fevers, decreased urine output, swelling, weight gain, and pain over your kidney. The chances of having a rejection episode are highest right after your surgery. The longer you have the kidney, the lower the chance that this will happen. Unfortunately, sometimes a rejection episode happens even if you’re doing everything you’re supposed to do. Sometimes the body just doesn’t accept the transplanted kidney. But even if a rejection episode happens, there are many ways to treat it so you do not lose your transplant. Letting your transplant team know right away that you think you have symptoms of rejection is very important.

How often do rejection episodes happen?

Due to improvements in immunosuppressive medicines, rejections have become less and less common in transplant patients. However, the risk of rejection is different for every person. For most people, rejection can be stopped with special anti-rejection medicines. It’s very important to have regular checkups to see how well your kidney is working, and make sure you are not having rejection. Learn more about transplant rejections.

When can I return to work?

How soon you can return to work depends on your recovery, the kind of work you do, and your other medical conditions. Many people can return to work eight weeks or more after their transplant. Your transplant team will help you decide when you can go back to work.

Will surgery affect sexual intimacy, or the ability to become pregnant?

People who have not had satisfactory sexual relations due to kidney disease may notice an improvement as they begin to feel better. In addition, fertility (the ability to conceive children) tends to increase. Men who have had a kidney transplant have fathered healthy children, and women with kidney transplants have had successful pregnancies. It’s best to talk to your healthcare practitioner when considering having a child. Women should avoid becoming pregnant too soon after a transplant. Most centers want women to wait a year or more. All pregnancies must be planned. Certain medications that can harm a developing baby must be stopped six weeks before trying to get pregnant. Birth control counseling may be helpful. It’s important to protect yourself against sexually transmitted diseases (STDs). Be sure to use protection during sexual activity. Learn more about sexuality and kidney transplants.

Will I need to follow a special diet?

In general, transplant recipients should eat a heart-healthy diet (low fat, low salt) and drink plenty of fluids. If you have diabetes or other health problems, you may still have some dietary restrictions. A dietitian can help you plan meals that are right for you. Click here to learn more about diet and nutrition.

How do I start the process of getting a transplant?

Ask your healthcare provider to refer you to a transplant center for an evaluation, or contact a transplant center in your area. Any kidney patient can ask for an evaluation. Click here to learn about transplant centers in Illinois.

How does the evaluation process work?

The evaluation process for a transplant is very thorough. Medical professionals will give you a complete physical exam, review your health records, and order a series of tests and X-rays to learn about your overall health. Everything that can affect how well you can handle treatment will be checked. Your healthcare team will need to know a lot about you to help them—and you—decide if a transplant is right for you. One thing you can do to speed the process is to get all the testing done as quickly as possible and stay in close contact with the transplant team. If you’re told you might not be right for a transplant, don’t be afraid to ask why—or if you might be eligible at some future time or at another center. Remember, being active in your own care is one of the best ways to stay healthy. If someone you know would like to donate a kidney to you, that person will also need to go through a screening to find out if he or she is a match and healthy enough to donate. If it’s your child who has kidney disease, you’ll want to give serious thought to getting a transplant evaluation for him or her. Because transplantation allows children and young adults to develop in as normal a way as possible in their formative years, it can be the best treatment for them. If the evaluation process shows that a transplant is right for you or your child, the next step is getting a suitable kidney. Learn more about the evaluation process here.

What does the operation involve?

You may be surprised to learn that your own kidneys generally aren’t taken out when you get a transplant. The surgeon leaves them where they are unless there is a medical reason to remove them. The donated kidney is placed into your lower abdomen (belly), where it’s easiest to connect it to your important blood vessels and bladder. Putting the new kidney in your abdomen also makes it easier to take care of any problems that might come up. The operation takes about four hours. You’ll be sore at first, but you should be out of bed in a day or so, and home within a week. If the kidney came from a living donor, it should start to work very quickly. A kidney from a deceased donor can take longer to start working—two to four weeks or more. If that happens, you may need dialysis until the kidney begins to work. After surgery, you’ll be taught about the medicines you’ll have to take and their side effects. You’ll also learn about diet. If you’ve been on dialysis, you’ll find that there are fewer restrictions on what you can eat and drink, which is one of the benefits of a transplant.

What are anti-rejection medicines?

Normally, your body fights off anything that isn’t part of itself, like germs and viruses. That system of protection is called your immune system. To stop your body from attacking or rejecting the donated kidney, you will have to take medicines to keep your immune system less active (called anti-rejection medicines or immunosuppressant medicines). You’ll need to take them as long as your new kidney is working. Without them, your immune system would see the donated kidney as “foreign,” and would attack and destroy it. Anti-rejection medicines can have some side effects. It is important to talk to your healthcare provider about them, so that you know what to expect. Fortunately, for most people, side effects are usually manageable. Changing the dose or type of medicine can often ease some of the side effects. Besides the immunosuppressive medicines, you will take other medicines as well. You will take medicines to protect you from infection, too. Most people find taking medicines a small trade for the freedom and quality of life that a successful transplant can provide.

• Learn more about immunosuppressant medicines
• Learn about the types of immunosuppressant medicines

What happens after surgery, when I go home?

Once you are home from the hospital, the most important work begins—the follow-up. For your transplant to be successful, you will have regular checkups, especially during the first year. At first, you may need blood tests several times a week. After that, you’ll need fewer checkups, but enough to make sure that your kidney is working well and that you have the right amount of anti-rejection medication in your body.

What if my body tries to reject the new kidney?

One thing that you and your healthcare team will watch for is acute rejection, which means that your body is suddenly trying to reject the transplanted kidney. A rejection episode may not have any clear signs or symptoms. That is why it is so important to have regular blood tests to check how well your kidney is working. Things you might notice that can let you know you are having rejection are fevers, decreased urine output, swelling, weight gain, and pain over your kidney. The chances of having a rejection episode are highest right after your surgery. The longer you have the kidney, the lower the chance that this will happen. Unfortunately, sometimes a rejection episode happens even if you’re doing everything you’re supposed to do. Sometimes the body just doesn’t accept the transplanted kidney. But even if a rejection episode happens, there are many ways to treat it so you do not lose your transplant. Letting your transplant team know right away that you think you have symptoms of rejection is very important.

How often do rejection episodes happen?

Due to improvements in immunosuppressive medicines, rejections have become less and less common in transplant patients. However, the risk of rejection is different for every person. For most people, rejection can be stopped with special anti-rejection medicines. It’s very important to have regular checkups to see how well your kidney is working, and make sure you are not having rejection. Learn more about transplant rejections.

When can I return to work?

How soon you can return to work depends on your recovery, the kind of work you do, and your other medical conditions. Many people can return to work eight weeks or more after their transplant. Your transplant team will help you decide when you can go back to work.

Will surgery affect sexual intimacy, or the ability to become pregnant?

People who have not had satisfactory sexual relations due to kidney disease may notice an improvement as they begin to feel better. In addition, fertility (the ability to conceive children) tends to increase. Men who have had a kidney transplant have fathered healthy children, and women with kidney transplants have had successful pregnancies. It’s best to talk to your healthcare practitioner when considering having a child. Women should avoid becoming pregnant too soon after a transplant. Most centers want women to wait a year or more. All pregnancies must be planned. Certain medications that can harm a developing baby must be stopped six weeks before trying to get pregnant. Birth control counseling may be helpful. It’s important to protect yourself against sexually transmitted diseases (STDs). Be sure to use protection during sexual activity. Learn more about sexuality and kidney transplants.

Will I need to follow a special diet?

In general, transplant recipients should eat a heart-healthy diet (low fat, low salt) and drink plenty of fluids. If you have diabetes or other health problems, you may still have some dietary restrictions. A dietitian can help you plan meals that are right for you. Click here to learn more about diet and nutrition.

Where do donated kidneys come from?

A donated kidney may come from someone who died and donated a healthy kidney. A person who has died and donated a kidney is called a deceased donor. Donated kidneys also can come from a living donor. This person may be a blood relative (like a brother or sister) or non-blood relative (like a husband or wife). They can also come from a friend or even a stranger. When a kidney is donated by a living person, the operations are done on the same day and can be scheduled at a convenient time for both the patient and the donor. A healthy person who donates a kidney can live a normal life with the one kidney that is left. But the operation is major surgery for the donor, as well as the recipient. As in any operation, there are some risks that you will need to consider.

Is it better to get a kidney from a living donor?

Kidneys from living or deceased donors both work well, but getting a kidney from a living donor can work faster and be better. A kidney from a living donor may last longer than one from a deceased donor. To get a deceased donor kidney, you will be placed on a waiting list once you have been cleared for a transplant. It can take many years for a good donor kidney to be offered to you. From the time you go on the list until a kidney is found, you may have to be on some form of dialysis. While you’re waiting, you’ll need regular blood tests to make sure you are ready when a kidney is found. If you’re on dialysis, your center will make the arrangements for these tests. Your transplant center should know how to reach you at all times. Once a kidney become available, the surgery must be done as soon as possible

Are there disadvantages to a living donation?

A disadvantage of living donation is that a healthy person must undergo surgery to remove a healthy kidney. The donor will need some recovery time before returning to work and other activities. However, recent advances in surgery (often called minimally invasive or laparoroscopic surgery) allow for very small incisions. This means shorter hospital stays and recovery time, less pain, and a quicker return to usual activities. Living donors often experience positive feelings about their courageous gift.

Are there financial costs for the living donor?

The surgery and evaluation is covered by Medicare or the recipient’s insurance. The living donor will not pay for anything related to the surgery. However, neither Medicare nor insurance covers time off from work, travel expenses, lodging, or other incidentals. The National Living Donor Assistance Program (www.livingdonorassistance.org) or other programs may help cover travel and lodging costs. Donors may be eligible for sick leave, state disability, and benefits under the federal Family Medical Leave Act. In addition, federal employees, some state employees, and certain other workers may be eligible for 30 days paid leave.

What is the transplant waitlist?

The United Network for Organ Sharing (UNOS) manages the list of all the people across the US waiting for an organ transplant. UNOS ensures that deceased donor organs are distributed fairly using a transparent system. For kidneys, this is a combination of blood-type and antibody matching, time with kidney failure, and a few other factors that give people priority on the list (including being a child or being a past live kidney donor).

When should I explore a kidney transplant?

It is best to explore transplant early in your disease course, before you need to start dialysis. This way, you might be able to get a transplant ‘pre-emptively,’ without ever needing to start dialysis. It can take time to find the right transplant center, complete the transplant evaluation, explore live kidney donor options, and get on the deceased donor transplant list if needed. If you are not yet on dialysis and have a GFR of 20 or less, you can already begin building “wait time” on the deceased donor transplant list.

How do I get on the transplant waitlist?

• Ask your healthcare professional for a referral to a local transplant center or contact a transplant center in your area. Learn as much as possible about the different transplant centers.
• Choose a transplant center that best fit your needs. Things you should consider when choosing one include:
  • Insurance coverage and cost.
  • Location for ease of going to and from the transplant center.
  • If you have a living donor, be sure the transplant center performs living donations and if your live donor isn’t a good match, that the transplant center participates in a ‘kidney paired exchange program.
  • Support group availability.

• Schedule an appointment for evaluation. An evaluation will help determine if you are a candidate for a kidney transplant. Each center has their own criteria for accepting patients for transplant.

How is the right organ found for me?

UNOS maintains a centralized computer network which links all organ procurement organizations (OPOs) and transplant centers (hospitals that perform transplants) and uses a complex matching system to determine organ distribution. Organ procurement organizations (OPOs) are responsible for recovering organs from deceased donors and getting these organs to transplant centers. They help people express their wishes about organ donation while they are alive, speak with grieving families about organ donation, and coordinate the deceased organ donation and distribution process. The OPOs can help direct a thank-you note to the deceased organ donor’s family, and are also involved in data follow-up regarding deceased organ donors. They raise awareness about organ donation. Many factors contribute to whether or not an organ will be offered to you, including, but not limited to: blood type, how long you have had kidney failure, medical urgency, where you live (an organ must be safely transported the distance to the transplant hospital), and in some instances your weight and size compared to that of the donor.

What is the average wait time for a kidney transplant?

Once you are added to the national organ transplant waiting list, you may receive an organ fairly quickly or you may wait many years. In general, the average time frame for waiting can be 3-5 years at most centers and even longer in some geographical regions of the country. You should ask your transplant center to get a better understanding of the wait times. Some factors that determine how long you wait include:

• How well you match with the available kidney
• Your blood group and if you are sensitized with high antibody levels (from prior failed transplants, blood transfusions, and/or pregnancies)
• How many donors are available in your local area

Why do some patients wait longer than others for a transplant?

Waiting time can depend on factors such as:

• ABO (blood type). Blood type O has the longest wait. This is because blood type O donors can donate to other blood groups, but a patient with blood type O can only receive an organ from a donor with blood type O. Also, it has been found that those with blood type B tend to have longer wait times as well.
• Prior pregnancies, blood transfusions, or past transplants. These increase a substance in your body called antibodies. A higher level of antibodies in your blood can make it more difficult to match with a compatible donor.

How do I know my status on the transplant wait list?

UNOS will not confirm your placement or your status on the waitlist, but your transplant center must inform you when you are placed on the waitlist, and you should be able to confirm with them that you are active on the list. Your transplant team will call you and will need you to respond quickly if there is an organ available for you. Each transplant center has different procedures. You should discuss this with your team so you have a plan in place for when a kidney is available to you.

What would disqualify me from getting a transplant? Does my age matter?

Each transplant center sets its own guidelines for transplants. Some transplant centers may have restrictions or rules around age. Doing research will help you find the transplant center that fits your needs. There may be some medical conditions that affect the risk of transplant for you. An example of an issue that can affect your transplant candidacy is a current or recent cancer diagnosis. Speak with your transplant team to talk about future possibilities of getting a transplant after your cancer has cleared. Other factors that may affect transplant candidacy:

• Serious heart disease
• Not being healthy enough to survive an operation
• Active infection
• Obesity (being overweight)
• Smoking or substance abuse

Can I be listed at multiple transplant centers?

Yes, it is possible to list at multiple transplant centers. Often people choose a transplant center closest to their home for convenience, but it is possible to list at multiple transplant centers if you wish. Click here to learn more about multiple listing.

How can I find a living donor?

Sometimes living donors give anonymously, in which case you may find one of the organ waitlist. But you can also find one yourself. Talk to your friends and family about your kidney failure and need for a donor. While you might not be comfortable asking people to donate, it may be helpful to make people aware of your need for a donor. That way, if someone is interested in pursuing donation, they can ask for more information. Some people also decide to share their story and tell co–workers, community organizations, social groups, people who belong to their place of worship, or local newspapers or magazines that they need a transplant. Many people are also turning to social media to share their story. Learn more about how to share your story here. Educate your family and friends about kidney transplantation and donation. You can contact NKF Cares, our national office's Patient Help Line toll-free at: (855) 653 - 2273 or emailnkfcares@kidney.org to request free educational brochures about donation to share with your friends or family members. The following may also be of help:

• The Big Ask, The Big Give. This resource center, run by our national office in New York, offers comprehensive information about transplants, donors, and how to ask for a donation.
• Alliance for Paired Donation. Helps save lives by significantly reducing the wait time for a kidney transplant through kidney paired donation.
• Living Donors Online. Is an online community for living donors, potential donors, their families, and the medical community.
• The National Kidney Registry. Helps save and improve the lives of people facing kidney failure by increasing the quality, speed, and number of living donor transplants in the world.
• The Paired Donation Network. Is dedicated to making living donor kidney transplantation possible for all patients with kidney failure. It includes over 80 kidney transplant programs in 23 states.
• The United Network for Organ Sharing (UNOS). Manages the waiting list for a transplant in the U.S. and matches donors to recipients. Their patient-centered Transplant Living site has additional information about organ donation and transplantation.