A Black Patient’s Journey Through Chronic Kidney Disease: From Diagnosis to Transplant

Managing chronic kidney disease (CKD) can present distinct obstacles for Black patients. Proactive self‑advocacy and a supportive care team are essential for navigating these challenges.

Fortunately, my clinical course—from diagnosis to transplant—has involved only one medical complication. However, my experience within the health‑care system was marked by many peaks and valleys, ultimately teaching me to find and use my own voice.

Because kidney disease runs in both sides of my family, I was determined to stay proactive. My primary care physician took a genuine interest in my health and helped devise a preventive plan that aligned with my insurance coverage for tests, medications, and the limited network of specialists.

During an annual physical, comprehensive labs revealed reduced kidney function and proteinuria. My doctor admitted limited expertise in nephrology and referred me to a specialist.

The nephrologist I saw was planning to retire within a year. He emphasized the need for a kidney biopsy but framed the procedure primarily as a step toward his own retirement rather than a thorough discussion of its purpose.

In many Black communities, the word “biopsy” evokes fear and mistrust rooted in historical injustices. This cultural context often leads middle‑aged and older Black patients—especially men—to delay or avoid elective procedures.

While the nephrologist explained the biopsy technique, he did not clarify the specific information he sought. The pathology report showed scarring of the kidney’s filtration units.

His treatment plan consisted of high‑dose prednisone for two weeks, a four‑week taper, and a low‑sodium diet. Six weeks later, my labs returned to the normal range, and I was advised to “be careful” because the issue could recur. The episode was documented as resolved, and any future kidney monitoring was classified as elective by my insurer.

Years later, my primary doctor noticed recurring symptoms and ordered repeat labs, which again revealed proteinuria. A new nephrologist—limited by my insurance network—diagnosed stage 3 CKD without performing a biopsy, relying instead on lab values, symptoms, and demographic assumptions.

This provider treated me as a case in an assembly line, a “trust‑and‑obey” model where patients are expected to follow orders without individualized attention.

In a brief 20‑minute visit, I learned about creatinine and glomerular filtration rate (GFR). I was told my kidneys would eventually fail and that a fistula for dialysis would be required.

The prescribed regimen quickly escalated to 16 daily medications, while I also managed newly diagnosed type 2 diabetes with frequent insulin injections. Within 18 months, I progressed from stage 3 to stage 5 CKD (end‑stage renal disease) and was placed on dialysis without a clear explanation for the rapid decline.

Lab results were communicated verbally, then handed to me in writing without any interpretation. I was unaware that two GFR calculations exist—a standard estimate and an “estimated GFR for African American patients” that can affect staging.

After two unsuccessful fistula placements and mounting out‑of‑pocket costs, I researched home‑based dialysis options. I requested information, attended a class on treatment modalities, and ultimately chose peritoneal dialysis (PD), which better suited my lifestyle. Unfortunately, many patients of color in the same practice were only offered in‑center hemodialysis.

My dialysis nurse provided thorough education, demonstrations, and written materials, allowing me to understand PD, accept my CKD diagnosis, and maintain hope of becoming a transplant candidate.

Several months on dialysis, my nephrologist finally ordered transplant eligibility testing. When I asked why this assessment was delayed, I was told, “That’s the process—dialysis first, then transplant.”

The transplant center’s staff were responsive and respectful. They explained the procedure, post‑transplant care, and supported my right to make informed choices. For the first time, I felt seen as a person, not a statistic.

Once I was listed for transplant, my “trust‑and‑obey” experience ended. I regained my voice, which unfortunately unsettled my former nephrologist.

During a hypertensive crisis, my daughter offered to donate a kidney, but I declined. She was deemed ineligible, yet her housemate and sorority sister proved a perfect match.

After receiving a transplant in 2016, I ended the doctor‑patient relationship with the nephrologist who had previously managed my care. The transplant team continued to oversee my health, and I no longer accepted care decisions based solely on “the numbers and the books.”

Today, I use my voice to help others avoid the same hurdles.

More Information About CKD

Experts estimate that approximately 35.5 million U.S. adults have CKD, and about 90 % are unaware of their condition. The National Kidney Foundation (NKF) reports that 1 in 3 U.S. adults are at risk for kidney disease.

NKF is the nation’s largest, patient‑focused organization dedicated to kidney‑disease awareness, prevention, and treatment. For more details, visit www.kidney.org.

Curtis Warfield is a Senior Quality Analyst for the State of Indiana. Since receiving his kidney transplant in 2016, he has advocated for kidney‑disease awareness and organ donation, focusing on low‑income people of color. He serves as a patient advocate, peer counselor, and committee member for the National Kidney Foundation and other national health organizations. He is married with four adult children and one grandchild.