After 20 years of living with a rare blood disorder, Maile Robb is grateful for the support of her husband, family and friends. “I’ve been married for 16 years,” she said. “I am so grateful. I feel like it’s almost my duty to help other people. I see so many people who don’t have the support I do.”
Maile’s journey with kidney disease began unexpectedly when she was a freshman in college. She was on an athletic scholarship for platform diving, when she came down with the flu along with the rest of the diving team. The student health center sent her to the hospital after her condition continued to worsen. At the hospital, Maile found out she was in kidney failure, due to a genetic form of atypical hemolytic uremic syndrome (aHUS). This disease causes blood clots to form in tiny blood vessels throughout the body. It damages the kidneys and other vital organs. Soon after her diagnosis Maile had a massive stroke due to the clotting.
After Maile recovered from the stroke, her father donated a kidney to her. “They didn’t know my disease was still active,” she said. “The kidney [was rejected] in five weeks.” For the next few years Maile used peritoneal dialysis and hemodialysis. When Maile’s younger sister turned 18, she was tested to see whether she could be a donor. Maile’s sister was a perfect match. The second transplanted kidney lasted three years.
After experiencing kidney failure a third time, Maile returned to dialysis. She was encouraged by the social worker at her dialysis center to volunteer with her local End Stage Renal Disease (ESRD) Network. ESRD Networks work with patients and providers to improve quality and access to care for those affected by kidney failure. Maile has been an active member of her Network’s Patient Leadership Committee for four years and currently serves as is its Chair.
Through her local ESRD Network, Maile became a member of the National Patient and Family Engagement Learning and Action Network (NPFE LAN). The NPFE LAN focuses on helping patients and care partners become more involved in their care. It develops educational materials and encourages patient-to-patient support through mentorship. Maile also participates in the NPFE LAN’s infection prevention affinity group.
“I’ve learned so much, getting a national perspective,” Maile said. “Things are so different in other areas of the country. I’m always surprised and impressed by how intelligent, well-spoken and thoughtful [the NPFE LAN members] are. When I hear what these other people are involved with, I always feel like I’m not doing enough. It’s an amazing group of people.”
Maile joined the infection prevention affinity group because she wanted to learn something new. She’s excited by the NPFE LAN’s work to help develop patient educational materials which incorporate the patient’s voice. “I love it when [we] patient volunteers give our input,” Maile said.
Maile’s group and others in the NPFE LAN have worked to develop and release several educational materials. This includes the first educational tools for an Infection Prevention Toolkit and Treatment Choices Toolkit and other tools under Getting Involved in Your Care, which are now available by visiting http://esrdncc.org/patients.
Maile sees how the NPFE LAN members take good care of themselves, and offers their example as advice to other patients. “The better [dialysis patients] take care of themselves, and monitor their labs and their fluid intake, the longer and more enjoyable [their] life will be,” she said.
#TogetherWeCan is a continuing series of stories from kidney patients and care partners, sharing their experiences and insights.