I am a 68 year old man born in Brooklyn, New York and living for decades in Ithaca, NY. I also have 10 years each with homes in @San Ramon, Costa Rica and @Austin, Texas. My present and future dreams are in #Africa and I am setting up a base in @CapeTown, South Africa. #notmytimetodie #supportmymiracle #childofimmigrants #latebloomer.
I was told a year ago that I would certainly die if I did not have not follow the standard treatment of care. I rejected both dialysis and a transplant and am told monthly I will die. Using myself as a science experiment I have kept myself alive, energetic, clear, optimistic and positive. I need your help to find the answers I need to continue to thrive. Time matters.
14 Months ago in July 2022, I went to the hospital for a routine blood test. I got a call when I arrived home telling me “Steven, you need to return to the hospital within an hour or we think you will die”. “We probably need to airlift you to a larger medical center via helicopter, but come over now”.
When I arrived, everybody looked frightened and later shared we have NEVER had anyone walk in alive with your numbers. My GFR/Kidney Function was 4.1; Creatinine 12.32; Phosphorous 9.7; BUN 152 and Hemoglobin of 4.0. After 8 days in the hospital balancing what we could I was told I could not recover or stay alive. I rejected ALL medical advice and was determined to 100 % try something less invasive. I went home.
A year later I continue to be a super outlier with GFR 5 and Creatinine 10. I have fired the doctors who tell me monthly I will die. I want/need a medical team that is amazed and curious that I am functioning my healthiest ever and work together as a team to learn more secrets to #CrackingTheKidneyCode. I Need Help Now. Aside from staying alive I want to start a totally new discussion that emanates from the patients and researchers their experience, hopes and dreams and not insurance companies, dialysis corporations, hospitals, medical schools, big pharma and other players. While trying to help, they are not giving me any answers or even asking the questions that I need explored. I am not a doctor.
I am old. I will die. My hopes are to set up a safe, empowering, smart site for kidney warriors, their helpers, doctors, families and friends. There will be a nonprofit/foundation to give us the financial muscle to execute with impact. Part of this process for us now is to build an open, global data and resource repository to help people similar to what I am going through and hope you will participate and help us find a cure for this terrible disease.
Thank you for sharing this post, becoming part of our community and helping me create the most interactive current site for Renal Warriors everywhere. #Legacy #RenalWarriors #RenalDisease
Please contact me at email@example.com
Source: Steven Freidmutter / Founder Renal Warriors.