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Episode Summary
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] – Welcome & Episode Introduction
Introducing the topic of kidney transplant and the importance of patient voices.
[00:01:00] – Why This Topic Matters
Ursula and Christine share personal connections to kidney disease and transplant.
[00:02:00] – Meet Susan McKenzie
Sue’s background as a transplant recipient and patient advocate.
[00:03:00] – Early Signs & Family History
How Sue’s family history shaped her awareness—and the missed early warnings.
[00:04:30] – Delayed Diagnosis & System Gaps
Challenges with early detection and referral to specialists.
[00:05:30] – Understanding Kidney Disease Today
Why many cases are still not diagnosed early enough.
[00:06:30] – Finding a Living Donor
Genetic barriers and the emotional journey of identifying a donor.
[00:08:00] – The Reality of Donor Testing
What donors go through and why the process can take months.
[00:10:00] – One-Day Testing vs. Long Wait Times
How system inefficiencies delay life-saving transplants.
[00:12:00] – Missed Opportunity for Preemptive Transplant
Why Sue had to go on dialysis despite having donors.
[00:14:00] – The Truth About Dialysis
Why dialysis is far more difficult than most people assume.
[00:16:00] – Invisible Illness & Daily Struggles
The hidden physical and emotional toll on patients.
[00:17:30] – Mental Health & Isolation
Depression, stigma, and carrying the burden silently.
[00:18:30] – The Need for Peer Support
Why connecting with someone who’s “been there” matters.
[00:20:30] – Birth of the Transplant Ambassador Program
Creating community and hope for patients and donors.
[00:24:00] – Advocacy & System Change
How real patient insights are driving national initiatives.
[00:25:30] – “Transplant First” Approach
Why transplant should be prioritized over dialysis.
[00:26:30] – The Cost of Dialysis vs. Transplant
A compelling case for better healthcare decisions.
[00:28:00] – Eligibility & Access Challenges
Why many patients don’t know they qualify for transplant.
[00:29:30] – Barriers to Living Donation
System delays that discourage willing donors.
[00:31:00] – Emotional Side of Donation
The complex relationship between donor and recipient.
[00:32:30] – Debunking Donor Risk Myths
Understanding the real safety of living donation.
[00:33:30] – Lack of Awareness About Kidney Disease
Why education is still urgently needed.
[00:34:00] – What’s Next: A New Podcast Initiative
Sue shares plans to expand awareness and support.
[00:35:00] – A Personal Note of Gratitude & Hope
Life after transplant—and the joy of second chances.
Susan McKenzie
She is a kidney transplant recipient, patient advocate, and leader in advancing care for kidney patients and donors. After receiving a life-saving transplant from her sister-in-law in 2010, she has dedicated her work to improving access to transplantation and patient support. Susan is the Co-Founder and Chair of the Transplant Ambassador Program and serves as President of the Kidney Patient and Donor Alliance of Canada and the Renal Patient and Donor Foundation of Canada. Through her advocacy, she works to raise awareness, address system gaps, and amplify the voices of patients and caregivers.
Medical Disclaimer:
The content shared on Amplify is for informational and educational purposes only.
Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations.
Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.