Kidney transplant for lupus: Your essential questions answered
A kidney transplant can be an important and sometimes necessary option for someone with severe lupus kidney disease. If you are thinking about seeking a kidney transplant (or if you are considering being a donor for a friend or family member with lupus), these answers to commonly-asked questions can help provide the information you need.
It’s important to understand what lupus can do to the body – it can attack any organ or groups of organs. Lupus nephritis is the term used when lupus attacks the kidneys, making them less able to properly remove waste from the blood or control the amount of fluids in the body. In 15-20% of cases, the kidneys of a person with lupus nephritis may fail despite treatment, and the patient will need chronic dialysis or a kidney transplant.
Lupus mostly impacts women ages 15-44 and lupus nephritis is more prevalent and often more severe in African Americans and Hispanics than in Caucasians. Studies have shown that minority women who develop lupus at a younger age tend to have more serious complications. Up to 60 percent of people with lupus will develop kidney complications. Women of color are especially at risk.
Despite treatment of lupus nephritis with medication, sometimes the inflammation is so severe that medication is not enough to prevent severe damage to the kidneys. Such damaged kidneys may not work well enough to clear the body of waste products. People with this level of damage will need dialysis or a kidney transplant. People who have lupus nephritis for a long time, and who have many disease flares and remissions with medication can also build up sufficient damage over the years to cause their kidneys to fail, even though they did respond to medications during individual flares.
Lupus nephritis affects both kidneys equally. If a person requires dialysis or transplantation it means both kidneys have been damaged and are not working.
This is a diagnosis determined based upon bloodwork, the evidence of the effectiveness of the kidney’s filtration function as well as the impact on the body. Kidney failure is when the kidneys no longer filter effectively to sustain the body’s needs, usually when functioning at less than 15% of their capacity.
No, sometimes a transplant can prevent someone from needing to spend years on dialysis. However, some patients may receive dialysis prior to receiving their organ. In patients with living donors, we often try to do a transplant before dialysis is needed to prevent ever going on dialysis. That is not always possible, depending on the disease, how ill the patient is, how available the donor is, and timing.
Dialysis is the process of an external machine doing the work of the kidney – that is, filtering waste products from the blood and excess fluids from the body.
During dialysis, blood is removed from the body by the pumps on a machine, passed through an artificial kidney, and returned to the body with fewer waste products. Over a few hours, the artificial kidney removes a lot of waste, which allows the patient to be well until the next dialysis session. Dialysis occurs an average of 3 times per week for hemodialysis, or every day for peritoneal dialysis.
There are over 200 known transplant centers in the US. It’s recommended that a person receive a referral from their primary care provider, so they can choose a center that will be the right fit for them. Then the person with the transplant team will determine their eligibility and requirements for placement on the transplant list. In addition, there are a variety of options if a person cannot find a suitable, living kidney donor. One is to be placed on the deceased donor transplant list where kidneys are obtained from people who die and have indicated they would like to be organ donors. Such kidneys are registered with national organ procurement organizations and go to individuals on the list with the best match. Another option is that a person can go onto a match list with other transplant patients who have donors. In this case, even if your donor is not a match, they can donate to a person who is a match. Then if you are a match, that person’s donor can donate to you.
People waiting for an organ on a donor list are prioritized based on disease process, need and expected outcome. Each time a kidney becomes available, it is checked with those on the list to make sure a good match is made. So even if someone is high on the list, they may be skipped over if the kidney isn’t compatible. The wait on a donor list can be anywhere from months to years. A living donor with a perfect match can shorten this waiting period considerably. Having a family member or friend who is a perfect match means you can move forward with preparations and can avoid a donation list. Often, blood type also influences how much time a person must wait for a match.
The organ procurement office will test the organs based on many factors. The process is extensive and will include: blood typing and blood antigens, size, and condition of the organ.
Family members can be a match, but a good match isn’t just in the DNA. It’s also about blood typing and finding any antigens that might not be compatible to the receiving person. Though there is a higher likelihood of good match from a sibling, many people have successful matches from non-related donors.
A good place to start is looking into www.organdonor.gov.
After being considered a match and scheduling the transplant, the donor needs to discuss the plan with the transplant team and what to expect post-op. While each facility is different, most can expect to stay in the hospital for 3-7 days and will need to regularly check in with their health care provider to monitor the health of their kidneys. They can continue to lead normal lives but need to be mindful of sports or lifestyles that would put their kidney at risk. However, we know from years of doing transplants that giving one kidney results in very little risk to the patient if they have no evidence of kidney disease themselves, or conditions like diabetes that could cause kidney disease.
The transplanted kidney is placed in your pelvis (on the lower left or right side of your abdomen), instead of in your back where your own two kidneys are located. This way, the kidney can easily be connected to the blood vessels it needs to work properly.
The original kidneys are usually not removed during a kidney transplant. After the transplant, they remain unused in the body, and the new (transplanted) kidney takes over their job as your body’s filter.
Since there is currently no cure for lupus, it is still possible for symptoms to return and for the disease to affect your kidney again. This is why it is so important to make sure you follow up with your healthcare team regularly and to be watchful for changes. Immunosuppressants can help keep lupus nephritis at bay, but they still cannot guarantee that it will not return. According to a 2005 study published in "Lupus," the risk of lupus nephritis returning is 2-30%.
Read more about this study, "Renal Transplantation in Lupus Nephritis," here: https://www.ncbi.nlm.nih.gov/pubmed/15732296.
Typically, it takes about 4-6 weeks to recover from a kidney transplant operation. Both the donor and the person who receives the kidney should pay attention to any signs of infection or pain. The person receiving the new kidney will need close follow-up and medication and will be closely monitored by the healthcare team to evaluate the body’s response to its new organ. Follow up appointments are important in the first weeks and months after receiving a new organ. These visits may include bloodwork, frequent visits to the transplant center or adjustments to medications.
Anyone receiving a new organ needs to follow their healthcare provider’s instructions about diet, exercise and stress management. They will usually be prescribed anti-rejection medications to keep the new kidney functioning well. It is very important to take the anti-rejection medications to prevent the body from rejecting the transplanted kidney.
Many people find that after a kidney transplant, their symptoms improve dramatically. This improvement may continue for a long time. Certain medications (such as immunosuppressants) are needed to help the body accept and function with the new kidney, and these might also help keep lupus symptoms away. There is no cure for lupus yet, but you can enter a time period when lupus symptoms are quiet, which is often called remission. It is important that you follow up with your healthcare team often to make sure your lupus stays in remission and to catch it early if your disease starts to become active again.
Most transplant receivers will need to take immune suppressants so that the body doesn’t reject the organ. The most common side effect of these medications is increased risk of infection. Many lupus patients take these medications to suppress their overactive immune system, even without transplant. So, it’s something people with lupus have to deal with a lot – avoiding infections and protecting themselves from contracting common viruses and colds.
The idea of a kidney transplant is that the recipient returns, after appropriate recovery, to their previous life, including working, exercising, and enjoying life. There may be restrictions because the immune suppressant medications weaken the immune system— which makes it especially important to avoid infection. Depending on how you heal, the transplant may affect what kind of exercise you can do, but we do like people to resume a healthy lifestyle that includes physical activity.
We recommend that people with autoimmune disorders like lupus get some kind of physical movement daily. This can look very different depending upon the day and the disease process. We always recommend people discuss their physical movement goals with their provider before starting anything new.
It’s important to continue following up with your nephrologist to monitor kidney function, even after a transplant. While one healthy kidney can do the work the body needs, close follow-up with a nephrologist is important to monitor any changes that might occur. Your nephrologist will monitor your blood pressure, any signs of protein in the urine, and how well your kidney filter fluids. You will want to tell your nephrologist if you notice any changes, including: swelling in your legs, increased blood pressure, or changes to your urine (such as a foamy appearance).
We recommend following these tips for daily living for people with lupus: www.resources.lupus.org/entry/dos-and-donts-for-living-well-with-lupus
High amounts of sodium cause the kidneys to work harder to filter the sodium from the blood, which can lead to high blood pressure. Therefore, it’s important to have a low-sodium diet when you have lupus nephritis. Also, we recommend not smoking and maintaining good nutrition and physical movement.
Studies have shown a much higher success rates in recent years than in the past. While results vary, people under proper follow-up can expect significant increase in their healthy years. Most can expect a transplant to last a decade or more, depending on the disease process. With close follow-up with your healthcare team and adherence to treatment, the organ could continue to function for many more years.
It is very important to continue watching for signs of changes in the kidneys, including edema, blood pressure changes, and urinalysis. You should talk to your doctor if you have concerns or notice any signs of change. However, sometimes a transplanted kidney will fail. Those patients may need to go on dialysis, but we always try to see if they can get another transplant.
Brad Rovin, MD
Professor of Medicine and Pathology, Ohio State University; Director, Division of Nephrology Director, GN Fellowship Program
Dr. Rovin specializes in autoimmune kidney disease and is a member of our Medical-Scientific Advisory Council Read Bio