To Teach By Example: A family's fight with PKD

Post submitted by Suzanne Ruff, a Patient Co-Investigator on our study. 

​Over 70 years ago, my mother stood next to her mother on her deathbed. My mother was a teenager at the time. My grandmother’s kidneys had failed and there was nothing the doctors could do for her. There was no dialysis, no transplants, no magic pill to save my grandmother.

Over 50 years ago, my mother stood next to her sister on her deathbed. Her kidneys had failed, too. Dialysis was new and exciting, but there were not enough dialysis machines for everyone who needed one. My aunt gave up her place on the waiting list for a dialysis machine so someone else with a family could live. My aunt was a Roman Catholic nun and felt God wanted her to do that. She died at age 45.
Two years later, my mom’s two brothers had kidneys that were failing. That’s when the family learned a genetic disease called polycystic kidney disease (PKD) caused all the heartache.

My mother and father decided to find out (with the antiquated genetic testing of 50 years ago) whether mom and their three children had the disease. The results almost destroyed my father. Three out of four of us tested had inherited polycystic kidney disease. A disease without a cure. Dad stumbled into the gloom of depression. Alcohol was his solace.

When Mom’s kidneys began to fail and she started dialysis, she often said how blessed and lucky she was because Medicare covered her dialysis. Dad was still a problem, though, and mom gave him an ultimatum: I need you. 
Do you know what Dad did? He stepped up, sobered up, and stood up to kidney disease with the kind of courage Dad said was given ‘by the grace of God’. 

He dedicated his life to being Mom’s caregiver and he did it with amazing grace. His compassion was genuine as he learned to cook and make the house sparkle. He tirelessly worked to educate himself about kidney disease, find a cure and fundraise. He wrote letters to Congress, knew his legislatures, and went to Capitol Hill. His claim to fame is that he made a telephone call that resulted in the first federal funding for research on polycystic kidney disease. Explaining why he stepped up, “It’s better than having a pity-party if you get involved.”

​Two months ago, I stood next to my Dad on his deathbed. Despite my tears, at 95 years of age, it was his time. I am blessed ‘by the grace of God’ to have had such a wonderful man for my father. 

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