How My Father Got Involved in Battling Kidney Disease 50 Years Ago

By Suzanne Ruff, AAKP Board of Director

 

 

How does someone without kidney disease help those with kidney disease?

 

“It isn’t easy,” my almost 95-year-old father said, ‘but you must face your fears and get involved.” That’s exactly what he did fifty years ago . . . during the dark ages of kidney disease.

 

Fifty years ago, computers and the internet were not available when my father was told his wife and two children were diagnosed with a kidney disease that had no cure. He did not share the bad news with anyone but my mother, deciding my sisters were too young to handle the truth. But that secret haunted my father . . . denial, sadness, and anger.

 

Dialysis was still a new and exorbitantly expensive treatment in the 1960’s. There were not enough machines for everyone needing to dialyze, which resulted in waiting lists for a dialysis machine! A patient had to find a way to pay for it himself if insurance didn’t cover the cost. Pivotal discussions in Congress were going on at this time about the way dialysis could save lives that before this new machine could not be saved. Transplantation and immunosuppressive drugs were ne to the world. The costs were beyond what a family could afford, $12,000 - $15,000 per year for dialysis when the average income was about $6,000.

 

Back in the 1960’s, my aunt and my two uncles developed kidney failure. My mother was their youngest sibling who would suffer renal failure in the 1970’s. My aunt, a Roman Catholic nun, gave up her place on the waiting list for a dialysis machine so a person with a family could have her place. She died at age 45. I was a child, and she was one of my favorite people on earth. How does one find the kind of courage and selflessness she had?

 

My father watched and learned as both of my mother’s brothers needed dialysis. My Uncle Bill Dwyer, a self-employed attorney in Maryland, who needed dialysis and couldn’t afford to pay for it was a vocal proponent of changes needed for kidney patients. Uncle Bill was also a member of the Knights of Columbus, a Catholic based fraternal organization. The local Veterans of Foreign Wars (VFW) held a benefit and the Knights of Columbus organized and helped Uncle Bill pay for his dialysis machine and supplies.

 

My family’s kidney failure was because of polycystic kidney disease (PKD), a hereditary disease. A diagnosis of kidney disease within a family affects everyone in that family. Our family has been especially hard hit with over twenty-three family members who have or had kidney disease.

 

Today’s laws and regulations revolving around renal patients and their care coincide with the real-life stories of my family. During the 1960’s and 1970’s many people involved in the renal world worked diligently to secure funding for dialysis and to help patients. Reading about the Social Security Acts of

1972 will help you understand the discussions going on today in Congress because of the explosion of patients suffering with ESRD in the 21st Century.

 

My family shines with examples of “getting involved.” Uncle Bill helped the National Association of Patients on Hemodialysis and Transplants (NAPHT) – the organization that became the American Association of Kidney Patients (AAKP) – by lobbying before Congress to fight for the high cost of dialysis and transplants.

 

My father served as Director and News Editor for the Chicago Chapter of NAPHT. Dad also worked with a NAPHT chapter in Florida where I was living. I used to type their newsletters on my old Smith-Corona typewriter for the small group of patients who formed NAPHT. Dad also worked as the National Treasurer of NAPHT and celebrated NAPHT’s 15th Anniversary where he received a faux leather pouch. I carry that pouch to my AAKP Board meetings to remind me of how far we have come. Both of my sisters, now transplant recipients, also volunteer and are involved.

 

My mother, who began dialysis in 1979, jokingly used to say my father became downright obnoxious about fighting kidney disease. Because my father headed up the advertising department where he worked, he called the newspaper to do a story on the lifesaving miracle of a dialysis machine as my mother sat hooked to the machine. My mother looks none too pleased in the photo of the article!

 

Fifty years ago were the days of letter-writing, telephone calls, and newspapers. My father proudly likes to brag, “I made a phone call that resulted in NIH funding kidney disease research!” Dad organized and joined with others to form an Illinois state kidney program that was one of its first and was noted by the powers that be who pushed for the Social Security Acts of 1972.

 

As the years went by, my mother joined Dad in his passion for helping kidney patients and after a successful transplant, vowed to help others. They always said it was inspirational to meet other patients, to visit their Congressmen and to pay attention to what goes on in Washington, DC that affects kidney patients. Mom passed away in 2003 and Dad is very frail now, but says he is proud of his daughters for carrying the torch, saying, “It’s better than having a pity party if you get involved.”

 

This article was originally published in aakpRENALIFE, January 2019 - click here.

Suzanne Ruff is a freelance writer for the Charlotte Observer and author of the non- fiction book The Reluctant Donor. The Reluctant Donor was a Finalist in the MIPA book award and also received the 2015 Illumination book award. She has been published in Chicken Soup for the Soul books. She is a living kidney donor and serves on the executive Board of Directors at AAKP, the Living Donor Council of the National Kidney Foundation and volunteers for the PKD Foundation. Passionate about kidneys, Suzanne speaks, writes and volunteers about all aspects of kidney disease, organ donation and the gift of another day.