Power of Self-Advocacy in CKD, with Aja Best

Aja Best’s journey with chronic kidney disease (CKD) began unexpectedly during pregnancy when routine tests revealed high levels of protein in her urine. Despite being offered the option to terminate her pregnancy to investigate further, she chose to continue as a high-risk patient and later experienced severe complications, including hypertension and preeclampsia. Six weeks postpartum, she was diagnosed with immunoglobulin A nephropathy (IgAN), an autoimmune kidney disease with no known cure.

Aja was initially unaware of the severity of her condition, and her kidney function deteriorated rapidly, reaching Stage 4 CKD within a year. A nephrologist warned her that she would soon need either dialysis or a transplant. Determined to pursue transplantation, Aja campaigned for a donor and found a match in her brother. However, her scheduled preemptive transplant was suddenly canceled the night before due to clinical oversights, leaving her devastated.

With no clear guidance from her medical team, Aja’s health worsened, and she was eventually hospitalized, experiencing severe hypertension, swelling and difficulty breathing. She was forced to start dialysis and ultimately opted for peritoneal dialysis (PD), which she managed from home for two years. During this time, she remained proactive, advocating for herself and seeking a transplant. Finally, she received a rare, altruistic living donor transplant, and in November, she celebrated four years posttransplant.

Now, Aja is dedicated to raising awareness about CKD and encouraging early intervention. She emphasizes the importance of patient education, provider communication and self-advocacy — core themes of World Kidney Day (March 13). She actively participates in patient support networks and urges people to get their kidney function tested. She also highlights the need for personalized care beyond the standard treatment protocols, aiming to improve outcomes for future patients with CKD.