Frequently Asked Questions about Kidney Transplant for People with Lupus
One type of lupus, known as systemic lupus erythematosus (SLE), can cause severe kidney problems. In fact, some people with SLE end up needing a kidney transplant to survive.
Lupus is a condition in which the immune system attacks the body’s own cells and organs. In people with SLE, lupus attacks the kidneys to cause a disease known as lupus nephritis. This kidney disease may worsen over time and may even lead to kidney failure that requires a kidney transplant.
Many of those with SLE who learn they have lupus nephritis and need a kidney transplant have questions. Family members and potential kidney donors also have questions about how they can help.
Frequently asked questions about lupus-related kidney disease
What is lupus nephritis?
Lupus nephritis is a type of kidney disease that develops when the immune system attacks the kidneys. The kidneys remove waste from the bloodstream and control the amount of fluids in the body; lupus nephritis damages the kidneys in ways that prevent them from doing their job well, in a condition known as kidney disease. Kidney failure is a condition in which the kidneys work well enough to sustain life. People with kidney failure must undergo dialysis or get a kidney transplant.
How common is it for lupus to affect the kidneys?
As many as half of all adults with lupus will develop kidney disease, according to the National Institutes of Health, and between 10 and 30 percent of people with lupus nephritis develop kidney failure.
Who does lupus nephritis affect?
Lupus typically affects women who are between the ages of 15 to 44, according to the Centers for Disease Control and Prevention (CDC). Lupus nephritis is more prevalent in African Americans and Hispanics than in Caucasians; it is usually more severe as well. Minority women who develop lupus at a younger age also tend to experience complications that are more serious.
Why does someone with lupus nephritis need a kidney transplant?
Medications may not always be enough to treat lupus nephritis. When their kidneys cannot function well enough to sustain life, people with lupus must undergo kidney dialysis or a kidney transplant. Kidney dialysis is a procedure that uses a machine to clean the blood; a kidney transplant is a procedure in which surgeons remove the patient’s own kidneys and replace them with kidneys from a donor.
Can someone with lupus get just one kidney?
Lupus nephritis often affects both kidneys equally. If kidney disease progresses to kidney failure severe enough to require dialysis or transplantation, it means both kidneys are failing.
Questions and answers about kidney failure
How do doctors determine that someone has kidney failure?
Doctors use laboratory blood work to assess how well a patient’s kidneys are filtering sodium (salt), waste products, and excess water from the blood. When the patient’s kidneys are functioning at less than 15 percent of their capacity, the doctors will diagnose the patient with kidney failure.
Does someone with kidney failure require dialysis before undergoing a transplant?
Not necessarily. Some patients receive dialysis prior to receiving their organ, but those who receive a kidney from a living donor will often undergo a kidney transplant before ever going on dialysis.
What exactly is dialysis?
There are two main types of dialysis: hemodialysis and peritoneal dialysis. Both work, in the same way, to remove toxins and excess fluids from the body.
During hemodialysis mechanical pumps remove blood from the patient’s body. The blood passes through an artificial kidney to remove toxins. The pumps then return the filtered blood back into the body. The process takes about 3 hours and removes enough waste to help the patient stay well until the next dialysis session. Patients typically undergo hemodialysis three days a week.
Another type of dialysis, known as peritoneal dialysis, uses the inside lining of the patient’s belly as a natural filter. Patients perform peritoneal dialysis each day.
About the donor matching process
How does someone find a kidney donor?
Kidney donors must be a good match, which means the recipient’s body is likely to accept the donated kidney. Doctors use blood tests, known as blood typing, tissue typing, and cross-matching, to determine if someone is a good match. Because relatives are more likely to have organs that are more compatible, family members are often good matches.
What happens if someone needs a kidney transplant but does not have a friend or relative who is a match?
Organ transplant centers can help match up donors and recipients. There are more than 250 organ transplant centers in the United States, and all are part of a larger network, known as the Organ Procurement and Transplantation Network (OPTN).
Unfortunately, there are not enough donor kidneys to go around, so recipients must sign up for placement on a waiting list. Doctors provide referrals for patients who need kidney transplants. Special transplant teams from local organ transplant centers then determine the patients’ eligibility for placement on the transplant list.
Some patients opt for placement on the deceased donor transplant list in which they agree to receive kidneys obtained from recently deceased donors.
How long do I have to wait for a kidney?
The wait is often longer in some geographical locations of the country than it is in others, but the average wait time for a kidney is 3 to 5 years, according to the National Kidney Foundation.
How do transplant teams prioritize patients on the waiting list?
Transplant teams prioritize patients according to how far kidney disease has progressed, the severity of their kidney disease, and their expected outcome. When a kidney becomes available, transplant teams check the waiting list for a patient that might be a good match for the kidney. This means that someone who has been waiting only a short time but is a good match might receive the kidney before someone who has been waiting a long time, but is not compatible.
How do they determine if a kidney is a good match?
The organ procurement team, who are the people that receive the kidneys from donors, test the organs for a variety of factors. The extensive process looks at the organ’s blood type (A, AB, B, and O) and whether a specific protein is present (+) or absent (-), for example. The organ procurement team also assesses the size and condition of the kidney.
Is a family member always a match?
Family members may be likely matches, but differences in blood type and size of the organ may make the kidney a bad match for the recipient.
Where should I go to find out if I am qualified to be a kidney donor?
The government website Organdonor.gov is a great place to learn about the registration process, watch educational videos about organ donation, and read the latest organ donation news.
How safe is kidney donation? Are there risks?
How safe is kidney donation? Are there risks?
Most people do not experience any health problems as the result of their kidney donation, although they have to be in good health to ensure that their remaining kidney functions properly for the rest of their lives. Doctors screen potential donors for high blood pressure and diabetes, which are the two main causes of kidney disease.
About the transplant surgery
Where in my body will the transplant team put my new kidney?
Kidneys are typically located towards the back of the abdomen, but transplant teams will put the donated kidney in the recipients’ pelvis, in the lower left or right side of the abdomen. This location makes it easier to connect the transplanted kidney to the patients’ blood vessels.
What happens to the original kidneys after the transplant?
Transplant surgeons typically leave the original kidneys in place in the recipient’s body, unless the kidneys were infected or causing other problems.
Can lupus nephritis affect the new kidney after transplantation?
There is currently no cure for lupus, which means it is possible that lupus will cause kidney disease in the donated organ. In fact, research shows that lupus nephritis recurs after transplantation in 2 to 30 percent of cases. Because lupus nephritis can affect the transplanted kidney, it is important that patients remain vigilant for symptoms of kidney disease and meet with their healthcare team regularly. Medications, such as immunosuppressants to slow the damage the immune system inflicts on the kidneys and other organs, can help prevent lupus nephritis from damaging the kidneys.
Recovering from kidney transplant surgery
What happens during the recovery process for the kidney donors and recipients?
The hospital stay for donors is usually 4 to 6 days, depending on the donor’s rate of recovery and the type of procedure performed. After leaving the hospital, the donor may experience tenderness, itching and some pain at the incision site. They should avoid heavy lifting for six weeks following surgery, and avoid playing contact sports that could injure the remaining kidney.
The hospital stay for recipients is 4 to 5 days after surgery, depending on the patient’s recovery rate, but it can take 4 to 6 weeks to recover. Recipients should watch for pain or signs of infection. Patients will also need to take immunosuppressants to prevent organ rejection and close follow-up from their doctors in the first weeks and months after receiving the kidneys. Follow-up visits may include laboratory blood work and medication adjustments.
How can someone with lupus stay healthy after receiving a new kidney?
Diet, exercise, and stress management are always important, but especially so after a kidney transplant. Anti-rejection medications can help keep the new kidney functioning well.
What happens to lupus nephritis after a transplant?
Many recipients discover that their lupus nephritis symptoms improve dramatically following a kidney transplant. Immunosuppressants that reduce the risk of organ rejection also help curb lupus symptoms. While there is no cure for lupus, patients can enter remission, which is a state in which lupus symptoms disappear.
What kinds of anti-rejection drugs will transplant recipients need after receiving a new kidney?
Transplant recipients must take immunosuppressants to prevent their bodies from rejecting the new kidneys. Many people with lupus already take immunosuppressants to keep their immune systems under control.
Do these drugs have any side effects?
Like all medications, immunosuppressants present a risk for side effects. Increased risk of infection is the most common side effect of immunosuppressants. Since many people with lupus already take immunosuppressants, they are already careful to avoid infections from small cuts, viruses, and colds.
After undergoing a kidney transplant, can someone with lupus still exercise and do other physical activities that they enjoy?
The main goal of a kidney transplant is to help people with lupus nephritis return to their normal activities of daily living, such as working, exercising, taking care of their families, and generally enjoying life. Taking immunosuppressant medications can prevent them from engaging in certain activities that increase the risk of infection, of course, but many people who underwent kidney transplantation after developing lupus nephritis are already accustomed to avoiding infection – and most are eager to get back to their regular lives. Depending on how well the recipients heal after transplantation surgery, most are able to return to a healthy lifestyle that includes physical activity, but it may take time. In fact, many doctors recommend gradually working up to exercise sessions lasting 20 to 30 minutes each day on three to four times per week. People with lupus nephritis who are recovering from kidney transplant should discuss an exercise plan with their doctors before starting anything new.
Do I need to follow up with my kidney doctor after a kidney transplant?
It is essential to continue following up with your kidney doctor, or nephrologist, after receiving a kidney transplant. Your nephrologist will assess the function of your kidneys and monitor your condition for changes that might occur. The kidney doctor will monitor your blood pressure, look for signs of protein in your urine, and run blood tests to determine how well your kidneys are filtering toxins from your bloodstream. It is important that you tell your nephrologist about any increases in your blood pressure, swelling in your legs, or changes to your urine, such as a foamy appearance.
Do people with lupus need to change their lifestyle after receiving a kidney transplant?
People with lupus do need to implement some changes to their lifestyles after they receive a kidney transplant. Consuming a low-salt diet can reduce the work kidneys have to do to remove sodium from the bloodstream and keep blood pressure low, for example, and maintaining a healthy diet and exercise routine can help people with lupus stay strong and healthy. Smoking is discouraged, of course, as part of a healthy lifestyle.
How long do kidneys typically last after a transplant? Will I need to get another kidney transplant later?
Transplanted kidneys last between 10 and 12 years on average, according to the University of Iowa Hospitals and Clinics. Adopting a healthy lifestyle, sticking with your treatment plan, and following up with your healthcare team can help your new kidney work well for the longest time possible – however, a transplanted kidney can fail, even with the best of care. Depending on your age and whether you develop lupus nephritis again, you may need another kidney transplant. Anyone who has had a kidney transplant after developing lupus nephritis should speak with their healthcare provider about ways to extend the life of their new kidney.