Living with Stage 4 Chronic Kidney Disease

Understanding the kidney transplantation operation

A kidney transplant is an operation that places a healthy kidney from another person into your body. The kidney may come from someone who has died or from a living person who may be a close relative, spouse, or friend. It can even come from someone who wishes to donate a kidney to anyone in need of a transplant.

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 our 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 transplant operation takes about 3 hours and you will be in the hospital for about 5 to 7 days. After the transplant, you will need to take special medications to prevent your body from rejecting the new kidney. You will have to take these medications for as long as you have the transplant. Many patients prefer a transplant over dialysis because it gives them more freedom, allows for a less restricted diet and may improve the quality and length of life.

Getting a transplant before you need to start dialysis is called a preemptive transplant. It allows you to avoid dialysis altogether. Getting a transplant not long after kidneys fail (but with some time on dialysis) is referred to as an early transplant. Both have benefits. Some research shows that a pre-emptive or early transplant, with little or no time spent on dialysis, can lead to better long-term health. It may also allow you to keep working, save time and money, and have a better quality of life.

For most patients, kidney transplantation is considered the best option. A kidney transplant is not a cure for kidney disease, but it can help you live longer and with a better quality of life. A person with a kidney transplant still has kidney disease, and may need some of the other medicines they took before the transplant. In making a decision about whether this is the best treatment for you, you may find it helpful to talk to people who already have a kidney transplant. You also need to speak to your healthcare team and family members.

For more information, you can watch this NKF video on kidney transplantation:

Starting the process of getting a kidney transplant

To start the process of getting a kidney transplant, ask your clinician to refer you to a transplant center for an evaluation, or contact a transplant center in your area. You will learn more about the risks and benefits of surgery and transplantation and your role as a partner in your care. You can ask for a tour of the transplant center and to meet other transplant recipients to learn about their experiences.

Kidney patients of all ages—from children to seniors—can get a transplant. You must be healthy enough to have the operation. You must also be free from cancer and infection. Different transplant centers have different expertise in dealing with “high risk patients” who are typically patients with other serious conditions or illnesses besides kidney disease that could make the outcome of transplants more difficult. If you are turned down at one center, you can always get a second opinion at another.

Planning ahead for a kidney transplant can lead to better health after transplant. Of course, not everyone has the time to plan ahead, and some people have sudden onset kidney disease requiring quick action. However, for the many people whose kidney disease progresses slowly, the timing of when you receive your transplant can improve your health afterwards.

People who are able to find a living donor, or are on a waiting list for a deceased donor where the anticipated wait time is short, are often able to avoid dialysis altogether, or at least limit the time they spend on dialysis. Avoiding or limiting time on dialysis to a year or a year and a half has been shown to contribute to better health after the transplant surgery.

For more information, you can watch the following video on kidney transplantation:

Evaluation for a kidney transplant

Every person being considered for transplant will get a full medical and psychosocial evaluation to make sure they are a good candidate for transplant. The purpose of the evaluation is to determine who is a good candidate for transplant and to decrease post-transplant complications. The evaluation can include the following prior to going on the transplant waiting list:

• Review of medical history and records

• Blood tests such as tissue typing and infection screening

• Chest X-ray

• Electrocardiogram (EKG)

In many cases, people who are older or have other health conditions like diabetes can still have successful kidney transplants. Careful evaluation is needed to understand and deal with any special risks. You may be asked to do some things that can lessen certain risks and improve the chances of a successful transplant. For example, you may be asked to lose weight or quit smoking.

You will also meet with the transplant team, which consists of a surgeon, transplant coordinator, social worker and others depending on your particular situation. The financial coordinator and social worker can talk to you about the costs involved. Be prepared to ask questions regarding what you should be prepared to pay and what your insurance and/or Medicare will cover.

The final decision about a kidney transplant is yours and. You will need to ask questions at your evaluation in order to be comfortable with your final choice.

Understanding the transplant waitlist

You can be added to the transplant waiting list, once you complete an evaluation at a transplant center and are found to be a good candidate for 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.

The United Network for Organ Sharing (UNOS) manages the list of all the people across the United States 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).

It is best to explore transplant as early as you can, and if possible before you need to start dialysis. This way, you might be able to get a transplant pre-emptively if possible. 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.

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 you should know about kidney donation

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. Any family members or friends who are interested in donating to you can contact your transplant center (ask for the “Transplant Coordinator”) for information and to begin the evaluation process.

If you choose kidney transplantation, you should talk to your friends and family about your 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. 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.

If you have any question about finding a donor, you can contact the National Kidney Foundation.

You can also learn more about the National Kidney Foundation’s initiative, THE BIG ASK: THE BIG GIVE. This initiative educates and raises awareness about living kidney donation and transplantation among kidney patients, their families, and friends: Click here to find out more.

Considering kidney transplantation: What can I do to?

The final decision about a kidney transplant is yours, so you should make an informed and be comfortable with your final choice. You should also:

• Learn as much as you can about kidney transplantation

• Find out as much as possible about kidney transplantation through local support groups, written materials and educational classes

• Ask your healthcare team to learn more and for help finding peer support. You cans also contact an organization such as the National Kidney Foundation

• Online communities are also available

• Discuss what you learn with family or close friends and share your feelings with them

If you decide on a kidney transplant, you can ask your healthcare team the following:

• Can I be evaluated at a transplant center?

• Can I build wait time on the donor transplant list (if you are not yet on dialysis and have a GFR of 20 or less)?

• What can I do to find a living donor?

• Is pre-emptive transplant surgery an option?

You can watch this video about someone who received a kidney transplant share their experience:

For more information on finding a living donor, you can read the this article.