#28: Onward: One Patient’s Journey From Virality to Advocacy (with Steve Winfree, Patient Advocate at IKONA Health)
Slice of Healthcare Team
02/15/2023
Episode Details:
What you’ll get out of this episode
Tim Fitzpatrick chats with Steve Winfree about the struggles he and so many other patients face when it comes to living with chronic kidney disease (CKD) and end stage kidney disease (ESKD). Steve takes us through his journey, from his surprise diagnosis while playing college basketball to eventually needing dialysis to survive, and finally to his transplant story that went viral and has logged more than 700 MILLION views to date. Since receiving his transplant from his wife, Heather, Steve has embarked on a personal mission to help other patients and care partners to share their stories and better understand their care.
In this episode you’ll discover:
- How Steve struggled to understand dialysis when it came time for him to start treatment, even after more than a decade with kidney disease.
- Why Steve found the pre-dialysis education experience intimidating and scary
- Why Steve’s experience (and a great care team) shows us kidney transplantation is not a cure, but rather one form of treatment. And like most fellow transplant recipients, we learn how Steve deals with having to take medications that suppress his immune system’s ability to fight off common viruses and colds.
- What it means to be a proactive patient, and why being a proactive patient is the most important part of your journey.
- Learn why Steve sets the example when it comes to resilience, optimism, and taking every opportunity to reframe his unexpected hospital trips as learning experiences.
- Steve and Heather recently signed a book and movie deal to share their story – so be sure to follow along after you listen to his voyage!
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