Leslie Taylor-Simo – Humans of Kidneyville Act for Kidneys Initiative

Humans of Kidneyville is an Iya Foundation Act for Kidneys Initiative that aims to raise awareness of kidney disease and the need for organ donation by bringing to light the plight and needs of End Stage Renal Disease patients by sharing their kidney health stories and experiences.

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Name: Leslie Taylor-Simo
Age when kidneys failed/diagnosed: 11
Cause of Kidney Failure:ANCA Positive Vasculitis  I am still pissed off my pediatrician did not give me a blood test. I had to go through six months of chemo and when my ANCA flipped to negative, I was thirteen.
Number of years with kidney failure: 26. I did peritoneal dialysis for a year and a half.
Transplant: Yes. I had my first transplant, through a living donor; my mom, at age 13. Due to a chronic rejection, I went back on hemodialysis on March 7th 2000. My second transplant received was through a deceased donor kidney on August 1st, 2000. It was an antigen mismatch, and it rejected immediately. I underwent plasma pheresis and hemodialysis for a month, and the kidney worked for 3 years. I went back to hemodialysis in November, 2003. I received a third transplant on July 21st 2005, through another deceased donor. That lasted 4 days short of ten years. It rejected because I became allergic to Myfortic. I am currently on dialysis for the fourth time. I do the home hemodialysis, and have been listed again for a fourth kidney.
Advice for people without kidney failure: Kidney disease is a silent disease; do not dismiss it. Become an organ donor.
Advice for someone who has been newly diagnosed with kidney failure: Keep a positive attitude, and always take care of yourself.
Would you say there’s Hope after diagnosis? There’s always hope. Always. Mental health is as important as physical health.
What’s the most difficult aspect of living with kidney disease? The most difficult aspect is difficulty in travel and medical costs.
How important is having a support system? Support systems are for sure important. Every now and then, I feel defective, but my friends, family, and husband don’t treat me like I have kidney disease…unless I need to talk. Most are empathetic, or at least, sympathetic.