Nancy Spaeth was a survivor, advocate for better kidney care
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It takes a big personality to deal with kidney failure and being on dialysis.
It takes an even bigger personality to step across the line of dealing with your own health issues to help and inspire others to deal with theirs.
Nancy Spaeth was a petite person physically, with the biggest personality to help others that I have ever known.
Nancy was believed to be the longest-surviving kidney patient in the world. She died on Jan. 14, after living 56 years on dialysis or with a kidney transplant. She is survived by her children Joshua and Sarah, her grandchildren and her brother Charles.
On dialysis
Today, all individuals diagnosed with kidney failure have access to dialysis and transplantation through the End-Stage Renal Disease Program, funded by Medicare. Things were different in the mid-1960s when Nancy was 18 years old, and her kidneys were failing. It was the early days of dialysis treatments for chronic kidney disease, and she was lucky to live in Seattle, where the Seattle Artificial Kidney Center (which later became Northwest Kidney Centers) was the first in the world to offer dialysis treatments to patients outside the hospital setting.
But before Nancy could receive dialysis, she had to go before and be “accepted” as a patient by an advisory panel of care providers and lay leaders nicknamed “the Life and Death Committee.” Because there was no health coverage for dialysis, few dialysis machines and few trained people to run them, all resources had to be rationed.
Patients were evaluated physically and psychologically to see if they had the mental and physical stamina to tolerate dialysis, and their contributions to society were also evaluated. This was health care rationing, and it spawned the discipline of medical ethics.
Nancy was accepted for dialysis by the committee but was told by her doctors that she would never be able to have a family, never be physically active or work, never ski (one of her desires) and certainly never have the stamina to reach out to help others with their health issues.
Nancy proved them all wrong.
She earned two college degrees, a bachelor’s degree in education degree from Seattle University in 1970 and a registered nursing degree from Bellevue College in 1983. She worked as a teacher and as a nurse for years, inspiring others. Nancy testified on behalf of kidney patients before state and federal lawmakers.
Always the advocate, Nancy was one of the first patients to volunteer in the first human clinical trials for the anemia drug erythropoietin, which dramatically changed the quality of life for kidney patients.
My experience
I first met Nancy around 1975, when I was a dietetic student at the University of Washington, interning at Northwest Kidney Centers. Nancy appeared in the nutrition office wanting to talk to someone: “How can we get all this salt out of people’s diets? It’s killing them!” she said.
For the next 46 years, Nancy continued to advocate for a healthier food supply for everyone. She could always be counted on to speak to groups, lawmakers and patients about healthy living and patient advocacy. I served on the Northwest Renal Network, the oversight body for dialysis at Northwest Kidney Centers with Nancy for years, where she always presented the voice and view of the patient.
Nancy reminded us that health care professionals need to look behind the patient, to see the person who is there and to never set limits for someone else.
Nancy summed up her life by saying, “All I ever wanted was a normal, decent life with children and the opportunity to give back to society at least as much as I have been given.”
I think she can cross that off her list.
- For more information:
- Katy G. Wilkens, MS, RD, was a student dietitian at Northwest Kidney Centers in 1975 when she first met Nancy Spaeth. She retired in 2021 as manager of the nutrition and fitness services department after 46 years at Northwest Kidney Centers.