JON’S KIDNEY DISEASE STORY
We tell the complete story of Jon’s chronic kidney disease experience, from diagnosis to experimental stem cell surgery:
Just One Challenge
– How Jon feels the Just One Challenge is opening up the opportunity for him to achieve his goals by ensuring he gets started every day
– Why obstacles like running in the rain are best overcome by having a minimal commitment
Pre-Diagnosis Memories
– Jon describes the “energy spells” he would experience as a child
– His first indication of an issue with his kidneys, when he didn’t pass the urine test as part of his physical exam for the US Naval Academy
– He had no other indications of a problem for roughly the next decade
– Jon’s friend Moses, a chef at the Olympic Training Center, who went through a kidney transplant and Jon’s desire to donate his kidney at that time
Diagnosis to Surgery
– Jon describes experience of receiving his diagnosis of a kidney problem from the doctors at the Olympic Training Center in Chula Vista, CA
– The confusion he felt being told he was half-way toward kidney failure
– His decision to delay his biopsy until after the Olympic Trials that summer and the effect his diagnosis had on his mental state entering that competition
– His official diagnosis of of focal segmental glomerulosclerosis (FSGS) at the end of 2008
– Why Jon credits being so physically fit with keeping him from needing dialysis or a transplant much sooner
– Why it’s hard for Jon to talk about how he handled his diagnosis in the years following
– How his priorities shifted and the effect that had on many of Jon’s decisions, and the lack of stability he had in his life at that time
– Jon’s next two years, when he became a preschool teacher for a year and was close to quitting the sport
Stem Cell Surgery
– How Jon heard about the experimental stem cell surgery to treat FSGS
– The role Brent Concolino and the Rock Institute have played in Jon’s life
– Drs Elliot Lander, Mark Berman, and Jackie See, their backgrounds and the roles they played in his procedure
– How Jon’s particular procedure used stem cells from his own fat (and why that was tricky given how little fat he had to draw from!)
– What some of the risks of using stem cells were, and the potential benefits that led Jon to decide to do it
– The actual details of the procedure
– How Jon felt and progressed in the six to twelve months after the procedure
Post-Surgery Status
– Jon’s latest test in September 2019 which showed that he was doing great, 8 years after the procedure and 20 years after his first indication of a kidney problem as a high school senior
– The limited data points available indicate that at a minimum, Jon’s kidney disease did not progress along a typical path and his stem cell treatment is one of the few potential reasons why
– We cannot say that stem cells reversed or cured Jon’s kidney disease, only that we believe it is an area where more research should be focused
– Our goal of raising awareness and funds for research into stem cells as a viable treatment for chronic kidney disease by telling Jon’s story wherever possible
– Chronic kidney disease affects one in seven people and over 100,000 people get diagnosed every year in the US
– The importance for all of us to get tested and catch it early if we are unfortunate enough to be diagnosed
– The reality for listeners interested in getting Jon’s treatment that stem cell treatments are, at the time of this publication, banned in the US and undergoing a drawn out review by the FDA
– And finally, an official disclaimer: everything discussed in this podcast is based on Jon’s experience and opinions, and has not been reviewed or endorsed by any of the doctors or other people who played a role in Jon’s experience. Any errors or miscommunications reside with us and not them.
If you liked this episode, you may also like our episode on Dealing with Forces Outside Your Control and our interview with musician and diabetic Michael Lemos.
Recorded July 3, 2020.
References
Why The Just One Challenge Works So Well – Go Be More Podcast
Episode #61: Jon Rankin, US Junior Champion in the 1500m and Founder of Go Be More Apparel – Clean Sport Podcast
What is FSGS? – National Kidney Foundation
Cell Surgical Network – StemCellRevolution.com
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