What should people with kidney disease consider before undergoing a kidney transplant?

Kidney transplantation is a major surgery and requires recovery time and post-transplant care. Patients should expect frequent lab and clinic visits for six to twelve weeks at the transplant center post-surgery. “When I was practicing at the University of California, San Diego, we had patients who weren’t local and had to rent a place for a couple of months or face long drives multiple times per week after their transplant,” says Dr. Julie Dominguez, medical director at Interwell Health.

One consideration for anyone who chooses to undergo a kidney transplant is that they will need to remain on immunosuppressants, or anti-rejection medications, for the rest of the transplanted kidney’s life to suppress their body’s natural immune response to fight the “foreign” kidney. These immunosuppressants can increase risks of infection and certain types of cancer, and can cause side effects such as tremors, headaches, and increased cholesterol.^{4 5}

Increasingly, kidney recipients are now prescribed steroid-free immunosuppressive medications, as long-term use of steroids is associated with risks such as diabetes, worsening hypertension, and other issues that can lead to an elevated cardiovascular risk burden and increased mortality risk.⁶ Providers will develop a personalized plan for each patient’s post-transplant medication needs and review any potential risks and side effects.

There are also costs associated with immunosuppressants that may be covered by insurance or under prescription assistance programs. The Centers for Medicare & Medicaid Services (CMS) recently introduced the Medicare Part B Immunosuppressive Drug (Part B-ID) benefit providing continuous coverage for immunosuppressive drugs for certain Medicare patients who do not have health insurance coverage.⁷

Immunosuppressants and other transplant-related medications, such as prophylactic antibiotics, make up only 7 percent of the total costs of a transplant, with the biggest expense being the transplantation surgery itself.⁸Overall, increasing transplant rates would save the health system money. While Medicare spends more than $89,000 annually on average for a dialysis patient, the annual cost for a kidney transplant patient is closer to $35,000.⁹

“It’s also important to remember that while kidney transplants can last for many years, they are not a cure for kidney disease. Kidney transplants can and do fail after some time,” adds Dr. Dominguez. On average, the lifespan of a transplanted kidney is about 10 years.¹⁰ In some cases, transplanted kidneys can last for 30 or more years.¹¹

What are common barriers to kidney transplant?

Socioeconomic and demographic disparities, including age and race, contribute to unequal access to transplant, and patients may also have financial concerns preventing them from considering transplant as a treatment option.¹² Patients without proper education on their kidney disease may also have questions on their diagnosis, kidney transplant requirements, and when and how to start the transplant process.

One cross-sectional survey of transplant and dialysis center staff found the top barriers to transplant include: transportation and/or distance to transplant center, low health literacy, lack of understanding about the transplant process, and low socioeconomic status. The same survey asked how providers can help patients complete the transplant evaluation process, and responses focused on patient education, guidance throughout the process, better communication with transplant centers, and assistance with transportation.¹³

How does Interwell improve kidney transplant rates?

Interwell is focused on educating patients, providing ongoing support, and removing barriers for those who decide to embark on the transplant process.

Education: Interwell places a heavy emphasis on engagement, education, and empowering patients to take control of their health so they can play an active, collaborative role in their care plan and choosing the best modality for their lifestyle. Patient education includes talking about transplant, how the waitlist process works, and what to expect after a kidney transplantation. When possible, Interwell supports preemptive transplants before patients ever start dialysis.

“The nephrologists work with patients to ensure they’re ready to start the transplant process, and we help support them along their transplant journey, whether they are just starting the process of getting listed, on the list waiting for a transplant, or have a friend or family member who has offered to donate one of their own kidneys,” says Tanya Greer, a registered nurse (RN) care manager at Interwell. Interdisciplinary care team members such as Greer work with patients to help them set up appointments and take steps to improve their overall health so they are ready for transplant when a kidney becomes available.

Wraparound support: While patients consider whether transplant is right for them, having a strong support system is critical. Care team members go out of their way to build strong relationships and establish trust, so their patients know they are not alone in the process.

RN care manager Greer recalls one patient in her late 50s who had just found out her kidney function had sharply declined. She was nearing end-stage kidney disease (ESKD), and she would need to either start dialysis or receive a transplant. “At first, she had a lot of anger and denial and grief. She didn’t even want to tell her family,” says Greer, who reassured the patient she was not alone. With ongoing support from her care team, the patient eventually told her family. “About a year after first joining our program, on one of our routine calls she told me her niece surprised her and was tested for a match and donated one of her kidneys. I thought, ‘Talk about a new lease on life! This is what it’s all about.’”

While the goal is for as many patients as possible to realize their transplant goals, Interwell’s care team also works with patients to ensure they have a contingency plan in case they ever need to start dialysis.

“I had one patient who was extremely disengaged and had no treatment plan when he first joined our program,” says RN care manager Keisha Ventura. “With consistent encouragement, he turned things around. He met with his surgeon and had his access placed to start dialysis, kept up with his follow-up appointments, took steps to improve his health, and eventually his lab results got better. He did everything right and it paid off: he was added to the waitlist on a Friday and, much to both of our surprise, was transplanted the next Monday."

Mary Johnson waited two years before receiving her kidney transplant. When Johnson first learned she had stage 3 CKD, she was stunned. She joined the kidney transplant waiting list when her disease was approaching stage 4, and at that time her nephrologist also connected her with Interwell. Johnson quickly bonded with her Interwell nurse, who helped her stay as healthy as possible to stave off kidney failure and delay dialysis until a donor kidney finally became available. Post-transplant, Johnson says, “Every day is a wonder and a miracle.”

Removing barriers: In addition to providing education and wraparound support from an interdisciplinary care team, Interwell does everything in its power to remove any barriers standing in the way of a potential kidney transplant, including coordinating transportation for patients who need assistance getting to appointments.

“If it’s transplant, we’ll help get you there,” says Fergie Augustine, a senior transportation coordinator at Interwell who works with patients, vascular access centers, and provider facilities to help patients make it to their appointments. “We get calls from clinics and transplant centers about patients needing weekly appointments to prepare for the transplant process, and we are happy to let them know we assist with coordinating anything transplant-related.”

“Our patients are incredibly grateful for our assistance,” adds Augustine. “A few months ago, I spoke with a patient in the process of getting a new kidney who was concerned his wife would be out of town when they were ready for his transplant. After ensuring him that we will be here for him and that all he needed to do was to give us a call, he expressed his gratitude and said he wouldn’t have made it this far on his transplant journey without Interwell.”

What’s next for kidney transplantation?

With more than 92,000 people on the organ transplant list waiting for a kidney, and most people on the list waiting three to five years for a kidney, there are numerous efforts underway to address the shortage of available kidneys for transplant.¹⁴

In May of 2024, the U.S. Department of Health and Human Services (HHS) announced the Increasing Organ Transplant Access (IOTA) model to expand access to kidney transplants and reduce disparities in the transplant process. The need to address inequities made headlines earlier in the year when more than 14,000 Black kidney transplant candidates were moved up on the priority list for kidney transplant after it was revealed that a widely used test had overestimated how well Black people’s kidneys were functioning.¹⁵ The issue further exacerbates already existing disparities in transplant access; Black people are less likely to receive a donated kidney, despite the fact that a disproportionate number of Black people end up in kidney failure.¹⁶

Policymakers and health leaders are also exploring ways to make it easier for people to become living donors. A new study published in the Journal of the American Medical Association (JAMA) shows donating a kidney is safer than ever, thanks to advances in surgical and medical care.¹⁷To help alleviate barriers to living donation, companies are also starting to offer generous paid leave policies. Interwell offers eight weeks of paid leave for organ donors and encourages team members who wish to give the gift of life to take advantage of the benefit.

Further on the horizon, scientists are making progress advancing xenotransplantation, or transplant from an animal to a human. In early 2024, two patients in the U.S. became the first in the world to receive gene-edited pig kidney transplants. The surgeries were experimental, but researchers are hopeful they’ll pave the way to future clinical trials involving pig organs.¹⁸

As stakeholders continue their work to improve kidney transplant access, Interwell remains focused on empowering patients to consider transplant as an option and removing barriers to transplant for those who choose it.

__________________________________________________________________

References

CenteredHeroBanner

BlogPostsGrid