Turning experience into impact: Vanessa Evans’ journey through kidney disease
At 12 years old, Vanessa Evans took a routine blood test that revealed she had low hematocrit levels. Soon after, she was diagnosed with chronic kidney disease (CKD) and needed a kidney transplant.
Vanessa had no discernible CKD symptoms and never felt sick, so her diagnosis came as a surprise. Sometimes, CKD can be a “silent” condition because it’s difficult to detect, and most people with early stage CKD don’t even know they have it. She continued without symptoms for the next six years, and at 18 years old, she decided to move forward with transplantation.
Vanessa received a kidney transplant from her mother, who was her living donor. While the surgery was ultimately successful, she had two seizures during the transplantation process and the seizure medication given to her in addition to the immunosuppressants damaged the transplanted kidney. As a result, this kidney lasted for five-and-a-half years, and once she lost it, she began dialysis. At the time, Vanessa’s care team did not explain the details of dialysis to her – she learned through experience.
Adapting to in-center dialysis
For three days a week, four hours per session, Vanessa was treated with in-center hemodialysis (HD). At first, she struggled to adapt to what would become her new normal. Many people living with CKD do; dialysis is life-changing and many patients, like Vanessa, who has now been on dialysis for nearly 30 years, remain on dialysis long-term.
When she first began dialysis, she was not aware of the major impact dialysis would have on her life, unless another transplant became available. Her fixed dialysis schedule required her to quit her finance job in Boston and move back in with her parents, as she rebuilt her future around treatment.
“My transplant got me through college, which I was grateful for,” recalled Vanessa. “But dialysis wasn’t really explained to me at this point in time. I didn’t understand the schedule, and I didn’t realize I was in this for the long-haul. I had a million questions, and I had to figure things out as I went along.”
For eight years, Vanessa continued in-center dialysis treatments. During these eight years, she met her husband, had two children, and lived her life as fully as possible. Over time, the demands of in-center treatment became difficult to manage with the demands of the rest of her life. Looking for alternative treatments, she began researching options on her own and learned about home hemodialysis (HHD).
The journey to home
At first, Vanessa’s hesitation with HHD was self-cannulation, or inserting her own dialysis needles. Her mentor, a technician at the center where she did dialysis, gave her the guidance and courage she needed to begin self-cannulating. Thanks to his patience and faith in her, Vanessa fully transitioned to HHD and has been on this home modality ever since.
Home dialysis gave Vanessa a new kind of freedom. She was, at first, nervous to bring dialysis home, worried it would turn her personal space into something clinical. She began dialyzing in a separate room, on her own. However, she soon felt left out and isolated while the rest of her family socialized without her. So, she and her family normalized home dialysis as a part of daily life. Both her sons grew up watching their mom dialyze at home right in their family room while they watched sports and spent time together as a family. They made HHD fit right into their lives.
Patient-centered empowerment
After leaving her job in finance, Vanessa became a part-time Spanish teacher, which gave her the flexibility to continue her in-center treatment schedule. Over time, she also started to get involved in the kidney community through volunteering, events, and conferences. As she began to network with people in the industry and speak about her own experience, she became a part-time consultant for Fresenius Medical Care (FME) while also maintaining her job as a Spanish teacher.
Eventually, Vanessa became Director of Advocacy, a full-time advocate at FME for people living with kidney disease. She is also the Chief Advocacy Officer for her own organization, Kidney Connective, a patient-centered platform designed to increase access to kidney transplantation and advance living kidney donation. Recently, Kidney Connective became one of the nine winners of the U.S. Department of Health and Human Services (HHS) KidneyX EMPOWER prize, a $4 million national competition to advance innovation supporting living kidney donors and people who depend on them. The competition was conducted by the Kidney Innovation Accelerator (KidneyX), a public-private partnership between HHS and the American Society of Nephrology (ASN).
As Director of Advocacy at FME, Vanessa supports a network of approximately 100 patient advocates in the U.S. who share their personal experiences with other people that are living with kidney disease. These advocates do not provide medical advice, but rather something just as valuable: Understanding and a shared experience. They help interested patients and families learn about all available treatment options, such as transplantation, peritoneal dialysis (PD), in-center dialysis including hemodiafiltration (HDF), and HHD. They also provide guidance on formulating questions for care teams and help patients gain confidence navigating their own journeys.
“Access to information is a crucial part of patient-centered care,” said Vanessa. “Newly diagnosed patients have a million questions, just like I did, and the more they know, the more successful their journey with chronic kidney disease will be. My goal is to empower and support patients as much as possible so they can be in control of their health and their lives.”
Publication Date: October 2026
