Lupus is an autoimmune disease in which your immune system mistakenly damages various tissues, including your skin, joints, heart, lungs, blood cells, or brain. It can also attack your kidneys. Your kidneys are responsible for filtering toxins and waste products out of your blood and for keeping healthy levels of fluids, salts, and minerals throughout your body. When lupus affects the kidneys, it is known as lupus nephritis.
Some people with lupus nephritis develop kidney failure, which happens when the kidneys completely shut down. Kidney failure, also called end-stage kidney disease (ESKD) or end-stage renal disease (ESRD), is one of the most common causes of death for people with lupus.
A kidney transplant is surgery in which your kidney (or kidneys) is removed and replaced with a kidney from a donor. This procedure is sometimes used as a treatment for severe lupus-related kidney problems. It may help reduce symptoms and improve your quality of life.
Your kidneys may need to be replaced if other treatments aren’t successful at keeping your kidney inflammation under control.
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.
If you are diagnosed with lupus nephritis, your doctor will prescribe various treatments to calm your immune system and protect your kidneys from damage. This may include medications like:
These therapies work for most people with lupus nephritis. However, up to 1 out of 5 people will continue to have kidney problems and require additional treatment options.
Dialysis is one option. During this treatment, your blood is passed through a machine that filters it and removes waste. Dialysis performs the jobs that your kidneys are supposed to do. People typically receive 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.
If your kidney disease is very severe or if you have had lupus nephritis for a long time, you may need a kidney transplant. Whether you receive dialysis, a transplant, or both depends on how sick you are and whether there is a donor available.
During a kidney transplant, your new kidney will come from either a living donor (possibly a family member or friend who wants to donate one of their two kidneys) or a deceased donor (a person who has recently died and indicated before their death that they wanted to donate organs).
Any donor you use has to be a good match. The person’s blood type needs to be compatible with yours, 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. Blood relatives are more likely to be a match because you will share some DNA, but not all family members are compatible.
If you have identified a 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.
If you do not 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.
Many people who need kidney transplants don’t have family and friends who can donate or are not able to find a paired donation. In this case, you will need to use 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 months or even years.
While you wait for a kidney, you’ll likely need to have regular doctors’ visits to monitor your health. Your doctor will also perform monthly blood tests so that they can quickly match your blood to a potential donor’s blood if a match becomes available.
During transplant surgery, your doctor will give you general anesthesia to lessen pain and make you fall asleep.
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 are using a live donor, your donor 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 some pain for several days after your surgery. You may have to stay in the hospital for up to a week.
Your new transplanted kidney may start to work right away if it came from a living donor. This may help you start to feel better very quickly. However, it can take a few weeks for your kidney function to improve if it came from a deceased donor.
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. You will 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.
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 low-sodium diet, getting physical activity, and avoiding smoking cigarettes.
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 1 out of 10 transplant recipients had their lupus come back in their kidneys.
Make sure to follow all of the instructions that your health care 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.
On MyLupusTeam, the social network for people with lupus and their loved ones, more than 219,000 people with lupus and their loved ones 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 MyLupusTeam.