Post submitted by PREPARE NOW Co-Investigator, Suzanne Ruff.
It’s an honor to be a Co-Investigator on the Prepare Now study. Kidneys are my passion. But, it wasn’t always so. Kidney disease has broken my heart. It has taken the lives of some of the people I loved most. Nine beloved family members (including my mother) have died of a genetic disease called polycystic kidney disease (PKD). My sisters and three of my cousins battle PKD now.
I used to worry, cower and hide from reality in a very immature manner amid my fears of kidney disease. Then, one day, I had to face reality. My sister had collapsed in renal failure.
I was named after a grandmother I never met. She died of kidney disease in the 1940’s before I was born. Dialysis was just being invented. Later, five of my grandmother’s six children inherited polycystic kidney disease and were proactive in advancing medical treatments and advocating for patients. I chronicled the challenges we have faced through the past seventy years in my book, The Reluctant Donor, so no one ever forgets how far we’ve come in the battle against kidney disease.
Reflecting on the past helped me make my decision to become a living kidney donor to my sister. Participating in the Prepare Now study is my way of helping the next generation - just as it was done for me through the grace and courage of my family.