Today when I Google “how long can a person live with my GFR 5% / kidney function the answer was “a few hours to a few weeks without dialysis.” In a study with 8000+ patients 65+ with similar numbers; a month was the survival time. @68 (Stage 5 kidney failure is less than 15% /GFR; I’m not even anywhere on/near the chart)
While I challenge this death sentence I feel better and clearer than I have in decades. I have needed to turn my body into a machine that I program 24/7 with the help of frequent blood tests to direct my tweaks. I have very little room for error.
I hope to find nephrologists, researchers and patients to help explore and support my non-traditional protocol. I am told monthly that I Must be on dialysis to survive. When I ask why I am still functioning, my medical team has Zero answers.
That said I hope and plan to live fully for years and decades.
As a solo act with no wife or kids and estranged from my birth family; my family of choice and tens of thousands globally are supporting and loving me. Wow! This is important and impactful. #solobutnotalone #globalcitizen #fromawanderingtribe #childofimmigrants
The Force is with me and I am a part of it. I need this as my situation and challenges are clearly much bigger than me. I feel humble grateful and somehow protected.
Since I did NOT get on the plane to #Nairobi 14 months ago my whole life has begun again. Very different relationship to myself and the world. This does not feel random at all.
I Love and Need you all to have a future. I’m hoping the best chapters are ahead of me.
Source: Steven Friedmutter / Founder Renal Warriors.