Lupus — short for systemic lupus erythematosus (SLE), one of four major subtypes — is an autoimmune disease. That means the immune system, which normally protects your body from infections, starts attacking healthy tissues by mistake. It can affect many parts of the body, including the skin, joints, heart, lungs, blood cells, brain, and kidneys.

The kidneys have an important job — they filter waste and extra fluid from your blood and help keep the right balance of salts and minerals in your body. When SLE causes swelling and damage in the kidneys, it’s called lupus nephritis.

Some people with lupus nephritis develop kidney failure, which means the kidneys stop working. This is also called end-stage kidney disease (ESKD) or end-stage renal disease (ESRD). Kidney failure, particularly end-stage kidney disease, is one of the leading causes of death in people with lupus. When the kidneys fail, a person will need dialysis — a treatment that filters waste and toxins from the blood — or a kidney transplant to survive.

After receiving a kidney transplant, you’ll need to take immunosuppressant or antirejection medications for the rest of your life.

A kidney transplant is a surgery in which a healthy kidney from a donor is placed into your body to take over the job of your failing kidneys. This procedure is sometimes used as a treatment for severe lupus-related kidney problems. The surgery is performed to replace the damaged kidney with a healthier one and help reduce symptoms to improve your quality of life.

Here are 11 facts you should know if you or someone you love is considering a kidney transplant to treat lupus nephritis.

1. Lupus Nephritis Is Fairly Common

According to the Lupus Foundation of America, 1.5 million Americans have lupus. About half of adults who have lupus will be diagnosed with lupus nephritis over the course of their illness. Additionally, 4 out of 5 children with lupus will develop kidney problems.

2. Lupus Nephritis May Be Treatable With Medication

If you’re diagnosed with lupus nephritis, your doctor may prescribe various treatments to calm your immune system and protect your kidneys from damage. These may include medications like:

• Corticosteroids to block the inflammation
• Immunosuppressants, like some chemotherapy drugs
• Diuretics (also called water pills) to get rid of extra fluids
• Drugs that treat high blood pressure, such as ACE inhibitors or beta-blockers
• Calcineurin inhibitors to block an enzyme called calcineurin
• Biologics, which are made from living cells — like certain antibodies

These therapies work for most people with lupus nephritis. However, up to 1 out of 5 people will continue to have kidney problems and need additional treatment options.

3. Dialysis Is Another Treatment Option

If your kidneys begin to fail, you may need dialysis. During dialysis, your blood is passed through a machine that filters out waste and extra fluid — the job your kidneys normally do. People typically undergo dialysis a few times per week, and the sessions can take several hours. You may receive dialysis at a hospital, at an outpatient center, or sometimes at home.

4. Severe Kidney Disease May Require a Transplant

If your kidney disease is very severe or if you’ve had lupus nephritis for a long time, you may need a kidney transplant because your kidneys stop functioning properly. Depending on your blood work and certain tests, your nephrologist will let you know if you need a kidney transplant. Whether you receive dialysis, a transplant, or both depends on how sick you are and whether there’s a donor available.

Your new kidney will come from either a living donor or a deceased donor who has recently died and indicated before their death that they wanted to donate organs.

5. Kidney Donors Can Be Living or Deceased

During a kidney transplant, your new kidney will come from either a living donor who wants to donate one of their two kidneys or a deceased donor who has recently died and indicated before their death that they wanted to donate organs.

If you’ve identified an appropriate living donor, doctors will have to make sure that both you and your donor are healthy enough to undergo surgery. Once you and your living donor have been cleared for surgery, you can schedule a kidney transplant right away.

6. Kidney Donors Don’t Have To Be Family

Any donor has to be a good match. The person’s blood type needs to be compatible with yours, meaning proteins on your tissues will have to match those from your donor, and you can’t produce any antibodies (immune system proteins) that are likely to attack the new kidney. You might have a family member or friend who is a good match and wants to donate a kidney. Blood relatives are more likely to be a match because you will share some DNA, but not all family members are compatible.

If you don’t have a family member or friend who is an appropriate donor for you, you may still be able to receive a transplant from a living donor through a process called paired donation. In this case, your loved one might donate a kidney to a stranger who is a better match, and their loved one might donate a kidney to you if you are a better match for them. The availability and rules of these types of programs are different for each hospital.

7. A Deceased Donor Kidney May Involve a Longer Wait

Many people who need kidney transplants don’t have family or friends who can donate or aren’t able to find a paired donation. In this case, you’ll need a deceased donor. Your doctor will refer you to a transplant center, which can then put you on a waiting list. You will be able to undergo surgery when a match is found. This process can take some time, as the average wait is three to five years in most parts of the country.

While you wait for a kidney, you should stay healthy and attend regular doctor appointments to monitor your health. Your doctor will also perform blood tests frequently so that they can quickly match your blood to a potential donor’s blood if a match becomes available.

8. A Kidney Transplant Involves Major Surgery

During transplant surgery, you’ll receive general anesthesia, which puts you into a deep sleep so you won’t feel pain during the procedure.

If you don’t have a family member or friend who is an appropriate donor for you, you may still be able to receive a transplant from a living donor through a process called paired donation.

Unless it is causing problems, your surgeon will likely leave your damaged kidney in your body, where it will sit unused. Next, the surgeon will place a new kidney into the lower part of your abdomen and connect it to your body’s blood vessels. If you’re using a live donor, they will undergo surgery at the same time in a nearby operating room.

In total, you’ll be in surgery for three to four hours. You will likely have pain for several days after your surgery. You may have to stay in the hospital for up to a week.

9. Your New Kidney May Work Immediately, or It May Take Some Time

If your newly transplanted kidney came from a living donor, it may start to work right away. This may help you start to feel better very quickly. However, you may need dialysis temporarily, as it may take a few weeks for your kidney function to improve.

It may take up to six weeks to recover after surgery. You may need to go to multiple follow-up visits so that your nephrologist (a doctor who specializes in kidneys) can check that your new organ is working effectively. You’ll also need to continue with follow-up appointments with your rheumatologist (a doctor who specializes in diseases of joints and muscles) to monitor your lupus activity. If the surgery was successful, you should eventually be able to go back to your usual activities.

10. Kidney Transplant Recipients Take Immunosuppressant Drugs for the Rest of Their Lives

After receiving a kidney transplant, you’ll need to take immunosuppressant or antirejection medications for the rest of your life. These drugs prevent your immune system from attacking your kidney.

It’s also a good idea to adopt other healthy lifestyle habits, such as eating a kidney-friendly diet, getting physical activity, and avoiding smoking cigarettes.

11. Lupus Nephritis May Return After a Kidney Transplant

Lupus nephritis can sometimes come back and damage your new kidney after a kidney transplant.

Past studies have estimated that as many as 3 out of 10 people who underwent a kidney transplant later developed lupus-related kidney problems. However, transplant medications have improved a great deal in recent decades, leading to better outcomes. One recent study found that only 1 out of 10 transplant recipients had their lupus come back in their kidneys.

Make sure to follow all of the instructions that your healthcare team gives you. If something isn’t clear, ask for clarification. Taking your medications as directed and adopting certain lifestyle habits can help keep your lupus under control and maintain the health of your new kidney after a transplant.

Talk With Others Who Understand

On MyLupusTeam, the social network for people with lupus and their loved ones, more than 236,000 people with lupus come together to ask questions, give advice, and share their stories with others who understand life with this condition.

Has your doctor told you that you may need a kidney transplant as a result of your lupus? Have you undergone kidney transplantation? Share your experience in the comments below, or start a conversation by posting on your Activities page.