Navigating healthcare can be overwhelming, but self-advocacy plays a crucial role in getting the care you need. In a recent discussion, three seasoned kidney care advocates—Dave White, Nichole Jefferson, and Kevin Fowler—shared their personal experiences with chronic kidney disease (CKD) and offered strategies to help other patients communicate effectively with healthcare providers. Their insights emphasize the power of speaking up, trusting your instincts, and taking control of your health decisions.* 

The Power of Self-Advocacy

Each speaker underscored the importance of advocating for oneself in a healthcare setting. Dave described his early struggles with dialysis, revealing how a simple conversation with his care team changed the trajectory of his treatment. 

“I was struggling for my first six months until I had an in-person care plan meeting,” he recalled. “Once they knew my challenges, we created a plan that changed my life.” He encourages patients to be honest about their needs, and work with their healthcare team to address barriers to care.

Kevin reinforced this message through his journey with polycystic kidney disease. While his doctor reassured him that his kidney function was stable, Kevin sensed that something was off. After advocating for an ultrasound, he learned that his condition was more serious than anticipated. 

“I went from being told I was doing fine to being in renal failure,” he said. His advice? “Trust your instincts. If something doesn’t seem right, don’t ignore those feelings.”

Nichole shared similar sentiments, detailing how her persistence led to critical medical interventions. When her doctor dismissed her concerns that her transplant was failing, she insisted on a biopsy, which confirmed that her kidney was 90% scarred. “The numbers never tell my true story,” she said. “I had to fight for the care I knew I needed.”

Creating an Effective Healthcare Plan

Though you know your body best, developing a care plan with your doctor ensures that your needs are met and that you have a clear roadmap for treatment. 

Dave’s approach involved asking direct questions and documenting his care needs, which allowed his healthcare team to respond effectively. “I have documentation from my care plan meetings that helped shape my treatment path,” he said.

Nichole took a proactive stance by researching multiple transplant centers and personally handling her referrals. “I didn’t wait for my doctor to send the papers—I made the calls myself,” she shared, highlighting the need to take charge of your health journey and not wait for other people to make things happen for you. 

Kevin recommended being mindful of additional health screenings, noting that transplant recipients often face secondary health risks. “I had to push for cardiology and endocrinology appointments myself,” he noted. His takeaway? Stay vigilant, do research, and request the tests and referrals you think you need, even if your doctor doesn’t immediately offer them.

Building a Support Network

One recurring theme throughout the discussion was the importance of finding a strong support network.  “Friends and family can be sympathetic, but only fellow patients can truly empathize,” Nichole said. She emphasized the value of connecting with kidney disease support groups, whether in person or online.

Kevin advised seeking out reputable organizations to volunteer with, like the American Kidney Fund or the National Kidney Foundation. “Surround yourself with people who uplift you,” he said. Dave agreed, adding that involvement in advocacy groups not only helps others but also strengthens your own sense of purpose and community.

Final Words of Advice

The speakers concluded with key takeaways for patients looking to take charge of their healthcare.

• Be proactive. “Don’t assume your doctor has all the answers,” Nichole cautions. “Ask questions and do your own research.”
• Demand the care you deserve. Kevin urged viewers, “If you want a kidney transplant, tell your doctor that’s what you want and ask what steps you need to take.”
• Seek help when needed. Dave reassured patients that learning to advocate for oneself is a process: “If you don’t know where to start, ask someone who does.”

The conversation served as a reminder that self-advocacy isn’t just about speaking up—it’s about taking ownership of your health journey. By staying informed, pushing for the care you deserve, and building a supportive community, you can navigate the healthcare system with confidence and clarity.

*Responsum Health. (2025, March 12). How to Own Your Plan of Care [Video file]. https://www.youtube.com/watch?v=s8vR9xm8GgY  

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