Transplants and Lupus
The World Health Organization estimates that more than 69,000 kidney transplants are performed worldwide. Whether the transplant is from a close friend, relative, or even total stranger, receiving a new kidney can mean getting a new lease on life for those with lupus nephritis and kidney failure.
- Introduction to Lupus Nephritis and Kidney Transplants
- How do I know if I need a kidney transplant?
- I need a kidney transplant. Now what?
- What does recovery from a kidney transplant look like?
- In Conclusion
Kidneys are one of the most commonly transplanted organs, and many of the recipients include those with lupus nephritis (LN). 10-30% of those with LN will eventually develop kidney failure or end-stage renal disease (ESRD) and need a donor organ.
Donor kidneys can come from either a living or deceased donor. Kidneys coming from living donors are preferable. About 46% of all kidney transplants performed worldwide are from living donors. Living donor transplants are viable for 15-20 years, while a kidney match from a deceased donor is viable for 10-15 years. If there is not an immediate match, someone needing a transplant may have to go on a donor waitlist. The waitlist can be anywhere from 3 to 5 years long, if not longer. Donors may come from a living match in a database, or someone recently deceased who agreed to be a donor upon death
About 50% of kidney transplants are rejected, and the risk is slightly higher for African Americans (57%). However, the benefits far outweigh the risks. A new kidney can improve an individual’s quality of life significantly. Benefits include having more strength and stamina, enjoying a more normal diet and fluid intake, alleviating health conditions such as anemia and high blood pressure, and having more control over daily life.
Not everyone with lupus nephritis will need a transplant – often, symptoms are minimal without leading to kidney damage and can be controlled with medication and lifestyle changes. However, for some with severe LN, a transplant may be inevitable. Those at the highest risk of needing a kidney transplant include young, African American women with SLE. This increased risk may be due to several factors, including physiology, the environment, and even social determinants of health (poverty rate, education, safety, etc.).
Once it is determined that damage has occurred in the kidneys, the severity of lupus nephritis is measured using a six-level class system developed by the International Society of Nephrology and the Renal Pathology Society:
Class 1: Minimal Mesangial Glomerulonephritis
Minimal kidney damage with minimal symptoms.
Class 2: Mesangial Proliferative Glomerulonephritis
An area of the kidney may show LN, and there may be blood and protein in the urine.
Class 3: Focal Glomerulonephritis
There is less than 50% damage to the main blood vessels of the kidney. There may be blood/protein in the urine, and blood pressure may be high.
Class 4: Diffuse Proliferative Glomerulonephritis
There is more than 50% damage to the kidney’s main blood vessels, and there may be kidney damage. Kidney function may also be impaired, and blood pressure may be high.
Class 5: Membranous Glomerulonephritis
Symptoms from classes 3 and 4 may be present and hardening of the vessels in the kidneys, and it may be time for dialysis or even a transplant.
Class 6: Advanced Sclerotic
More than 90% of the kidney’s major vessels are damaged, and it may be time for dialysis or a transplant.
In the case of class 5 or 6 lupus nephritis, chances are high that a kidney transplant will be needed, and the practitioner will start discussing the transplantation process with to prepare the patient for what is to come.
Your healthcare practitioner will first check your lupus disease activity. Disease activity needs to be low or in remission to avoid flares and complications from transplant surgery. If disease activity is too high, dialysis may be suggested first, in order to get your lupus symptoms under control. This generally takes 3 to 6 months. However, studies have shown it to take longer for some individuals, especially for African Americans.
When lupus activity is low and it is time to start looking for a donor, the following steps will need to be taken:
- A cardiac evaluation will be performed to ensure your cardiovascular system is healthy enough to go through surgery.
- A test for antiphospholipid syndrome (APS) and the presence of antiphospholipid antibodies (aPL) will be ordered. Both conditions can increase the risk for organ rejection.
Once a patient’s health is stable enough to receive a transplant, they will be referred to a transplant center, which will help you locate a donor. Need is prioritized by those who have a compromised immune system, blood type, and if a donor match is available – that is, someone whose blood and tissue types match yours. While the process can be stressful, eventually finding the perfect match can be exhilarating and bring an enormous sense of relief.
Getting an organ transplant is truly a stressful, life-changing event. Therefore, there are things you will need to do to make the process as stress-free as possible:
- keep all healthcare appointments and follow any instructions to stay as healthy as possible;
- organize your personal/financial affairs and coordinate your support system so they can provide the physical and emotional support you will need;
- educate yourself on what it means to be a transplant recipient and how your health insurance works;
- stay in close contact with your healthcare team by always having your phone with you in case a donor is available at a moment’s notice;
- mentally prepare yourself for surgery and recovery; and
- have your hospital bag packed and ready to go!
The typical hospital stay globally is about 5 days depending on other health conditions and any complications. Sometimes, this may require a day in intensive care, but that’s not typical. Often, the healthcare team will have the patient up and walking a day after surgery!
For the first year after a transplant, the patient will meet with their transplant team every two weeks. After that, they will meet with them once a year and will be released back into the care of their nephrologist for monitoring. It is imperative to keep all of scheduled appointments and keep in close contact so the healthcare team can keep a close eye on their health progress. They will continually monitor for complications, including cardiovascular disease, blood clots, APS, and infections.
You will also be monitored closely for transplant rejection. In a study of 6,850 individuals with SLE and LN who received a kidney transplant, 1,770 experienced rejection. Symptoms of organ rejection include:
- nausea and vomiting; and
- problems urinating.
It is important to report any of these symptoms immediately to the healthcare team.
Some experience relapse lupus nephritis (RLN) – the risk is more significant for young, African American women. However, RLN itself does not increase the risk for transplant rejection, nor does it impact survival rates. RLN symptoms are usually pretty mild, do not cause damage, and typically do not occur in the transplanted kidney.
After the transplant, the patient will need to take medications for the rest of their life in order to maintain kidney health and prevent organ rejection. The medications prescribed may be familiar – they are pretty much the same ones prescribed for many with lupus and include prednisone, and immunosuppressants such as:
- azathioprine (Imuran), and mycophenolic acid (CellCept, Myfortic);
- cyclosporine, tacrolimus and sirolimus (rapamycin);
Cae after surgery also includes:
Resting and limiting exposure to germs for 6-8 weeks after surgery. This may mean limiting who you spend time with, too.
Maintaining good hygiene – this includes being careful around your pets! You may want to recruit a member of your support system to dispose of pet waste because animal waste can transmit infections to vulnerable humans.
Sticking to medication plans, maintaining a healthy diet, and healthy lifestyle habits.
Keeping all medical and preventative health screening appointments.
Wearing sunblock and avoiding the sun as much as possible to prevent lupus flares.
Receiving a kidney transplant is a difficult and life-long journey, that can be more even challenging while also managing lupus. It requires a great deal of teamwork, coordination, education, and a lot of patience. That, of course, requires a healthy supply of donated organs such as kidneys. So, you can help by also raising awareness about the need for organ donations! In the years since the first kidney transplant was successfully performed in 1954, millions of individuals have gone on to lead longer, healthier lives with few complications, making the rewards well worth the risks.
Bajema, I., Wilhelmus, S., Alpers, C., Bruijn, J., Colvin, R., Cook, H., D’Agati, V., Ferrario, F., Haas, M., Jennette, J., Joh, K., Nast, C., Noel, L., Rijnink, E., Roberts, I., Seshan, S., Sethi, S., & Fogo, A. (2018). Revision of the International Society of Nephrology/Renal Pathology Society classification for lupus nephritis: Clarification of definitions, and modified National Institutes of Health activity and chronicity indices. Kidney International, 90(4), 789-796. https://doi.org/10.1016/j.kint.2017.11.023
Burgos, P., Perkins, E., Guillermo, J., Pons-Estel, S., Kendricks, S., Liu, J., Kendrick, W., Cook, W., Julian, B., Alarcon, G., & Kew II, C. (2009). Risk factors and impact of recurrent lupus nephritis in patients with systemic lupus erythematosus undergoing renal transplantation: Data from a single US institution. Arthritis & Rheumatism, 60(9), 2757-2766. https://onlinelibrary.wiley.com/doi/full/10.1002/art.24776
GKT1 activity and practices. (2021). World Health Organization. https://www.who.int/transplantation/gkt/statistics/en/
Kidney transplant. (2021). The University of Kansas Health System. https://www.kansashealthsystem.com/care/specialties/kidney-transplant/resources/kidney-transplant-recovery
Lionaki, S., Skalioti, C., & Bletis, J. (2014). Kidney transplantation in patients with systemic lupus erythematosus. World Journal of Transplantation, 4(3), 176-182. doi: 10.5500/wjt.v4.176. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208080/
National Kidney Foundation. (2021). https://www.kidney.org
Ponticelli, C. & Moroni, G. (2005). Renal transplantation in lupus nephritis. Lupus, 14, 95-98. https://doi.org/10.1191%2F0961203305lu2067oa
Preventing rejection. (2021). Power2Save. https://power2save.org/about-organ-transplants/preventing-rejection/
What is transplantation? (2021). World Kidney Day. https://www.worldkidneyday.org/facts/topics/organ-donation/transplantation/
Author: Liz Heintz
Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.
All images, unless otherwise noted, are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.
All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.