PKD Awareness Day is designed to bring to the attention of people everywhere the need for continued research to find a cure for polycystic kidney disease (PKD). According to the PKD Foundation, “On September 4th, we celebrate PKD Awareness Day. A day dedicated to educating and inspiring our friends, families, and communities to learn about PKD. When more people learn about PKD, more people get involved. And that means more resources dedicated to finding treatments and a cure.”
To honor the occasion, I want to tell you a story about my Father that heightened and raised my awareness of PKD, and is the direct reason I am such a persistent advocate for PKD/Kidney Patients everywhere. I have lost 5 members of my family to polycystic kidney disease, including my Dad. My Dad passed away on September 18th, 1983. He died of congestive heart failure and uremic poisoning secondary to polycystic kidney disease at St. Margaret’s Hospital in Hammond, Indiana.
For the last month of his life, he was hospitalized. He would never return to his home in Cedar Lake, Indiana ever again. Worse yet, he knew he was sick, he knew he was dying. But yet, when the doctors and the nurses asked him to speak to another patient about peritoneal dialysis, he would do it.
Peritoneal dialysis was new in Lake County, Indiana by 1983, and my Dad was one of the first that was willing to try it. He had been on In Center Hemodialysis previously and he was told this would be better for him and enable him to continue working at his Certified Grocery Store. He and my Mother had built that business from a tiny corner store in 1948, to 2 large supermarkets by 1966. It was his pride and joy, his life, his reason to be. Next to his family, he loved those stores. For this reason, he accepted PD.
The last month of his life while hospitalized, I came to stay with him every single day. I owed him so much, my life, my education, my profession as an attorney. One morning near the end of his life, his doctor asked him to speak to a new dialysis patient who was hospitalized. He accepted. They unhooked him from the machinery that was keeping him alive, put him in a wooden wheel chair and asked me to wheel down the hall to this patient’s room.
When we arrived, my Dad spoke to the man about the pros and cons of peritoneal dialysis. My Dad was not like me and my Mother. He was an introvert by his nature. If you went out to dinner with him, you had better be prepared to carry the conversation, because he may go through the whole meal without saying a word. He studdered and he stammered. He struggled to get through his talk. Several times he had to stop and catch his breath. Several times I asked him, ‘are you ok?’ and ‘do you want to go back to your room?’ He finally finished. The man thanked him and I wheeled him back to his room. I had to wrap my arm under both his arms and cross his chest to keep him in the wheelchair. 3 nurses had to help him back into his bed. He was exhausted. He died later that month. After his death, the hospital published a newsletter, with my Dad on the front page extolling the virtues of peritoneal dialysis and their services. The article left the impression that my Dad was still alive and thriving.
I was livid. I felt they had used my Dad for profit.
But I realize now that they did all of this with my Father’s knowledge and consent. He wanted to do this. He wanted to help his fellow PKD/CKD patients. He wanted to help them to avoid some of the pain and misfortune he went through as a PKD patient. He wanted to “educating and [inspire] our friends, families, and communities to learn about PKD.”
So on this September 4th, 2021, PKD Awareness Day, I remember my Father, the PKD/Kidney Advocate, who set the example for me, and hopefully now, for you as well. Happy PKD Awareness Day my friends.