When Sarah and Cliff Jones first met, they were both working in dialysis care—but they didn’t know how their professional experience in kidney care would play a significant role in their own personal lives.
Several years later, Cliff was experiencing recurring strep throat, so he decided to check in with his doctor. His blood work indicated he had IgA nephropathy, also known as Berger’s disease. IgA nephropathy occurs when immunoglobulin A (IgA) builds up in the kidneys, resulting in inflammation and reduced kidney function.
“I didn’t really have any symptoms,” says Cliff. “It was all pretty much lab-related.”
For an estimated 90% of the approximately 37 million U.S. adults living with kidney disease, it can be typical not to experience symptoms of kidney decline.
Because symptoms of IgA nephropathy—such as darker or foamy urine, pain in the back below the ribs, swelling in hands and feet or high blood pressure—often don’t develop until later stages, the disease can go undetected for years. As a result of his professional and personal experience, Cliff encourages others to seek early testing and prevention.
“Whenever you’re showing signs of something wrong with your body,” Cliff adds, “it’s important to make sure you follow up and get things checked out.”
With IgA nephropathy, individuals may have the option of treating the condition by kidney transplantation or by medication management. At first, Cliff chose medications, but when things took a turn for the worse, he realized he’d need to pursue transplantation.
Kidney transplantation is often associated with improved quality of life, as recipients are able to return to normal day-to-day activities and spend time with their loved ones without managing a dialysis treatment schedule. And although dialysis is a life-saving treatment, kidney transplantation is associated with longer life spans and fewer side effects that can be associated with dialysis treatment, including nausea, vomiting, low blood pressure, muscle cramping and itchy skin.
However, eligible transplant candidates face significant barriers in pursuing this ideal treatment option. As education on kidney transplant expands, individuals also face financial hurdles and a lack of donors.
Approximately 100,000 Americans are currently on the kidney transplant wait list[i]—and the average waitlist time can be three to five years.
The kidney care community continues to seek ways to help expand access to transplantation. Living donation is one opportunity for this. Of the approximately 25,000 kidney transplantations in the U.S. during 2021, about 6,000 were from living donors.1
According to the National Kidney Foundation (NKF), living donation offers some benefits over deceased donation.[ii] This can include reduced risk of rejection when donation is done between family members due to better genetic matches. And while some deceased-donor kidneys may require some time before they function, living-donor kidneys typically function immediately because the organ has very little time out of a body.
In 2021, DaVita Kidney Care collaborated with the National Kidney Foundation (NKF) in The Big Ask: The Big Give platform and program. The goal of the program was to offer transplant candidates resources to help them ask loved ones to become a living donor.
According to the website for the program, asking someone to be a living donor can be a life-saving conversation—but it can also feel uncomfortable. The website indicates that many people won’t get a transplant simply because they do not know how to ask. The Big Ask: The Big Give highlights resources and tips to help navigate these important conversations and empower them to be advocates for their own health.
For those considering living donation, The Big Ask: The Big Give provides information and resources about the decision as well as insight on the evaluation, surgery and recovery processes for kidney donation. This includes financial considerations—including time away from work needed to recover from the surgery, a common concern when considering living donation.
When Sarah, Cliff’s girlfriend at the time, learned Cliff would be pursuing transplantation, she was ready, though.
“I had had thoughts previously about donating a kidney,” Sarah says. “It really wasn’t a decision. The conversation was pretty much me telling Cliff, ‘Hey, I’m going to do this.’”
Relying on Their Care Teams
Although Cliff and Sarah were both well-versed in kidney care and familiar with the kidney transplantation, they still leaned on their transplant care teams as they went through the process themselves.
In particular, the team helped reconfirm for Sarah that people can and do live normal lives with one kidney.
“They did a really good job of showing the data,” Sarah explains. “And that gave me the reassurance that I really needed—that the probability is high that I would be just fine with one kidney. That really helped calm my nerves about the situation.”
As part of the process, both Sarah and Cliff had to undergo evaluations—to ensure that they were both medically suited to the procedure, that Sarah was a match for Cliff, and that they had support, both logistically and emotionally, to help them through the process.
And when needed, Sarah turned to her transplant coordinator for emotional support.
“She was my rock,” Sarah recalls. “She was the person I called if I had a question or to say, ‘hey, I forgot to ask you this in our appointment,’ and she was amazing.”
Having the care team to provide information, answers and schedules as they considered medications needed post-surgery, financial commitments and follow-up appointment, helped put the couple at ease.
“They don’t ever let you just sit there and feel uncomfortable or have questions,” Sarah says.
Two Surgeries and a Wedding
Cliff received his kidney transplant from Sarah on November 7, 2019.
Recovery times vary person-to-person for transplantation procedures. Cliff was up and walking the same day as the procedure. Sarah, however, had a longer recovery time. As she recovered from surgery, she did experience some complications. Additional procedures due to fluid build up and infections slowed her recovery.
Typically, donors can expect to be able to return to work four-to-six weeks post-surgery. However, the complications Sarah experienced meant she needed to extend her leave of absence from work.
At the time of donation, Sarah was a teammate (employee) at DaVita. Throughout her experience, her work team stayed in contact—whether it was to send flowers, offer meals and provide additional comfort.
Through it all, too, Cliff was there for her, too.
“There was a switch from her donating to me, to me be being her care giver as she recovered,” Cliff says. “It was a shift, and I think it was a good shift, though, for us as a couple.”
The experience of caring for each other through such a significant experience brought the couple closer together, and on December 20, 2019—a little over a month after the transplant surgeries—Cliff and Sarah made their way to their local courthouse to get married.
Two years later, Cliff and Sarah are still grateful for their experience.
“Being a kidney donor, it gave me a sense of meaning in my life that I had not known before,” Sarah shares.
And for those considering transplantation, Cliff offers this advice:
“Go for it. Those who can do it and have a donor in place—they should go for it.”
To support DaVita teammates (employees) who choose to be a living donor, DaVita has expanded the paid leave of absence benefit. Effective as of January 2022, DaVita teammates who undergo living donation receive four consecutive weeks of fully-paid time off to allow for additional recovery time.