Reflecting on 50 Years of Living with Kidney Disease
March 14, 2022
I’ve lived with kidney disease since the age of 2, back when the medical world was first learning how to treat the disease. I was not expected to live. Dialysis was in its infancy stages back in 1968, and so was I. The medical community became my world. I earned my education as a patient, while spending so much of my time in hospitals and being the first to try a new treatment. The medical professionals who did all they could to extend my time on this planet became my friends and extended family members. It was a lonely start in life as I missed many childhood experiences. I spent all my teenager years on dialysis.
My life was saved by doctors who were the pioneers in the field of kidney care. I was just a baby when they hooked me up to a modified machine to clean my blood. It sounds crazy, but it’s true! I was the experiment. I was the lab rat! They modified that washing machine, and it became a prototype for dialysis. I was the youngest person in the state of California to ever be placed on peritoneal dialysis at the age of 13. My life was dependent upon all the doctors, nurses, and caregivers who became like family to me. Yes, my journey within the medical community has been arduous. I have had four transplants and more than 50 surgeries, and I spent 13 years on dialysis, but that is how I came to know so much about kidney disease.
After beating all the odds, I started the Renal Support Network (RSN) in 1993. I did it because I didn’t want others with kidney disease to feel as lonely as I once did. I wanted to let them know that if they become knowledgeable about their illness and proactive in their care, they will realize there is lots of hope! Peer support is important to learn how to deal with all the emotions and to navigate this illness – “One friend can make the difference.” We have expanded our programs to help people have hope and to be proactive in their care.
As RSN’s President and Founder, it is my goal to give people living with chronic kidney disease the tools to take control of the course and management of this life-threatening illness. It’s hard to believe through our patient engagement programs we have grown to reach millions of people.
We need to do everything possible to better understand how to preserve the health of people who have chronic kidney disease, the well-being of transplant recipients and ensure people on dialysis have quality care.
Good policy improves and protects the lives of people who suffer from with kidney disease. Innovation has been the cornerstone of my survival and well-being. My goal of being a founding member of Kidney Care Partners is to do my best to educate the community and provide the patient’s perspective on how policy and regulations impact patients and their families on a grassroots level.
I have seen the evolution of this illness during my 5O plus years of living with kidney disease. I’m grateful for all the people who have a hand in improving quality and my goals is to serve my peers who will rely on this system for generations to come.