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!
Watch
Listen
Recommended Resources
- Watch Steve find out that his wife is a match to be his kidney donor! (Tennessean)
- Heather Winfree shared the video of Steve finding out she’s his donor (YouTube)
- Steve has helped curate 300+ top patient education resources (IKONA)
- Steve joined IKONA’s Patient Experience Series to share more of his story (YouTube)
Join the Conversation
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Steve & Heather Winfree on Facebook
“The most powerful thing you can do as a kidney patient is to turn pain into purpose.
I stand by my saying that, “if you can take the worst thing happening in your life and find a way to use it to help others going through the same thing”, you can answer the question ‘why me?’ at the end of the day.
It took time for me to fall into that mindset after dealing with self pity and feeling sorry for myself. Your journey as a kidney patient, and any other disease, makes you very unique. People want to hear stories from others just like them. They yearn for that familiarity.
This is a photo from my very first dialysis session and my first time speaking to congress on Capitol Hill. The world needs your story, so please do not be afraid to share it!” @Steve Winfree on Linkedin
About Your Host
Tim Fitzpatrick is the CEO of IKONA Health, a company using neurobiology and immersive technology to improve how patients learn about their care and treatment options. Tim co-founded IKONA based on his own patient experiences while serving in the US Navy and now in the VA health system. He has served as Principal Investigator on multiple federal research grants, has co-authored papers on learning science, VR, and mental health in the age of COVID-19, and has partnered with top healthcare investors and institutions including the National Science Foundation, Department of Defense, National Artificial Intelligence Institute, StartUp Health, On Deck, FundRx, MATTER and NVIDIA.
T-Minus 10 is produced by Slice of Healthcare
Sponsored by: IKONA Health
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