Meet Lewis Simon

Autosomal Dominant Polycystic Kidney Disease (ADPKD) runs in my father’s side of the family. His mother died in her 40’s from it, and he was on dialysis because of it during my elementary and middle school years. I myself was diagnosed with ADPKD at the age of 10 via ultrasound, and ever since then, I have been fascinated, intrigued, and admittedly slightly troubled by kidney health and kidney disease research. When my father’s condition was worsening and the dialysis was becoming less and less effective for him, my mother decided to get tested to see if she could donate a kidney to him. Miraculously, she was a match, and my father was able to receive one of her healthy kidneys. The transplant, performed at UCLA, was successful, and my family and I owe a debt of gratitude to the entire transplant team for the success of the surgery. To this day, my father is healthy, active, and has far more energy than I can ever remember seeing him having. Keep this story in mind- I’ll come back to it a little later. 

Fast forward almost 10 years later, I met UCLA Nephrologist Dr. Anjay Rastogi at the Los Angeles Walk for PKD, and it was clear from the start that he cared deeply for his patients. Since then, Dr. Rastogi has helped me enroll in multiple ADPKD clinical trials and has helped me learn how to manage my ADPKD. Over the years, he has always treated my family and I with the highest levels of respect, care and support. He consistently goes above and beyond to help his patients, and I am truly fortunate to have such a skilled, caring, and respectful individual as my doctor and as my friend. 

Going back to the story about my father’s kidney transplant where he received one of my mother’s kidneys, remember how the transplant took place at UCLA? Well, guess who the transplant physician was for their transplant surgery… it was Dr. Rastogi! So, almost 10 years before I even met Dr. Rastogi, he had been the UCLA transplant physician who helped my mother successfully donate a kidney to my father, which had basically saved my father’s life! Neither I, nor my parents had any idea that Dr. Rastogi had presided over the surgery, and it was only in 2016 that we found an organ donation certificate that noted the transplant surgeon (Dr. Schulam), transplant physician (Dr. Rastogi), and transplant coordinator (Suzanne McGuire) for the surgery, which at that point had occurred over 13 years prior. While this may just seem like a funny coincidence, I like to think of it as a sign that Dr. Rastogi and my family were meant to meet, and that we were meant to help each other. 

Now, I am a Master’s Student in Applied Epidemiology at CSU-Northridge*, volunteering in Dr. Rastogi’s research office, where we run clinical research trials for patients with kidney disease, and Dr. Rastogi continues to help me enroll in ADPKD trials and manage my ADPKD, while also continuing to support me and advise me in my academic and personal ventures. 

I am proud to be a part of the Green Ribbon Campaign because I believe that increased awareness of kidney disease and overall support of kidney disease patients and research play essential roles in achieving improved health outcomes for all those affected by kidney disease. As an ambassador for the Green Ribbon Campaign, I will help spread knowledge, bring awareness, educate, offer support, and provide motivation to those affected by kidney disease, or even to those who just wish to know more about it.

*Lewis Simon now has a PhD and still continues to assist in clinical research trials!