Kidney disease is often called a “silent illness”—but for those living with it, the reality is anything but quiet.

In this powerful episode of Amplify: Elevating Patient Voices, Ursula Mann joined by Christine Pisapia and special guest Susan McKenzie, a kidney transplant recipient and leading patient advocate. Sue shares her deeply personal journey—from delayed diagnosis and emergency dialysis to receiving a life-changing transplant from her sister-in-law.

Together, they unpack the hidden challenges within the healthcare system, including missed early detection, long donor testing timelines, and the emotional toll of dialysis. The conversation also shines a light on the transformative impact of peer support through the Transplant Ambassador Program, and why a “transplant-first” approach could improve both patient outcomes and healthcare costs.

This episode is a candid, eye-opening look at the realities of kidney disease—and a hopeful call to action for better awareness, advocacy, and patient-centered care.

🎧 Why You Should Listen

• Gain a real-life perspective on kidney disease, dialysis, and transplant
• Understand the gaps in early diagnosis and healthcare systems
• Learn why living donor transplants are often the best option
• Discover the emotional and mental health impact of dialysis
• Be inspired by powerful patient advocacy and peer support initiatives

⏱️ Episode Highlights

[00:00:00] – Introduction to Kidney Transplant Conversations
Ursula and Brent introduce the episode and welcome Christine Pia and guest Susan McKenzie.

[00:02:00] – Sue’s Personal Journey with Kidney Disease
Family history, early warning signs, and the long road to diagnosis.

[00:04:30] – Delayed Diagnosis and Missed Opportunities
How lack of early intervention led to disease progression.

[00:06:00] – Finding a Living Donor
Challenges of genetic conditions and the emotional journey of donor matching.

[00:08:30] – What Donor Testing Really Involves
A deep dive into the extensive and often lengthy donor evaluation process.

[00:12:00] – Why Preemptive Transplant Matters
The missed opportunity to avoid dialysis and why timing is critical.

[00:14:30] – The Reality of Dialysis
Breaking the myth: why dialysis is physically and emotionally exhausting.

[00:17:00] – The Hidden Struggles Patients Face
Living with illness while trying to maintain a “normal” life.

[00:18:30] – The Power of Peer Support
How the Transplant Ambassador Program is changing patient experiences.

[00:24:00] – Advocacy and the ‘Transplant First’ Movement
Why systemic change is needed to prioritize transplants over dialysis.

[00:26:00] – The Cost of Dialysis vs. Transplant
A compelling case for better healthcare investment decisions.

[00:29:00] – Barriers to Living Donation
Why willing donors sometimes don’t make it through the system.

[00:32:00] – Debunking Myths About Donor Risk
Understanding the real (and minimal) risks of kidney donation.

[00:33:30] – What People Don’t Know About Kidney Disease
Why awareness and education are still lacking.

[00:34:00] – A New Podcast to Amplify Kidney Patient Voices
Sue shares her upcoming initiative to educate and support patients.

[00:35:00] – A Heartwarming Ending
Sue reflects on life after transplant—and time with her twin granddaughters.

Want to Share Your Voice?

If you’re a patient or caregiver, you can join Patient Voice Connect to share your experiences and help shape healthcare here.

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