Survivor on 50-year battle with chronic kidney disease: "I'm very hopeful"

SEATTLE -- She’s considered one of the longest surviving chronic kidney patients in the world.

Nancy Hewitt Spaeth of Mercer Island has lived with the disease for 50 years.

"This is graduation from high school," Spaeth said while looking at an album of old photographs.

Spaeth cherishes all of the moments growing up that many of us take for granted.

"This is my college sorority parties," Spaeth said while pointing to another photo. "Gifts. Honeymoon."

Maybe it’s because of the diagnosis she got at a young age. At 10 years old, she was out hiking with a group of girls at a camp when she walked into a rotten log with a yellow jacket nest inside it. The yellow jacket stings created an immune response, which began to damage her kidneys, she said. 

"A year later, my urine turned brown. And I remember going to the kitchen and telling mother that my urine was brown," Spaeth said.

Chronic kidney disease would change her life at a time when illnesses were never really talked about.One of Spaeth's earliest treatments was a revolutionary device on her arm known as the Scribner Shunt, she said.

"Shortly after I started treatment, I’m quite thin because I have no appetite. And I’m hiding my arms ‘cause it’s wrapped in gauze," Spaeth said while pointing to another photo in her album.

In 1966 at the age of 19, Spaeth started receiving dialysis treatment only 6 years after it became available to patients like her, she said. She was one of the few lucky ones chosen by a committee to get it, she added.

"Very, very defining moment," Spaeth said. "Had I not been one, I would have been dead within a year."

"The culture in those days was you don’t talk about illness, you don’t talk about politics, you don’t talk about money. And so, it was something you just didn’t talk about," Spaeth said. "I, on the other hand, remember saying to my brother, 'I’m not gonna change who I am. People need to know about this. And if they ask my questions, I’m going to tell them.' I wanted them to know that I was alive because of this gift of dialysis. And it was a gift."

The Seattle area was on the forefront of treatment, Spaeth said.

Inside a little known museum on the back side of the Northwest Kidney Center on Seattle's Capitol Hill, Spaeth showed KOMO News how dialysis machines have evolved since she was diagnosed 5 decades ago.

"Well, you may look at large pieces of equipment that have morphed into smaller pieces of equipment. Essentially, dialysis is the same treatment as it was when Nancy started. We have not had very great gains in this field. In part because we invented a therapy before we had done a lot of research to really understand kidney failure," said Joyce Jackson, President and CEO of Northwest Kidney Centers.

"So all the energy has been put into developing treatment centers and government funding has gone to that and minimal funding has gone to kidney research."

The Kidney Research Institute, which started in 2008, is working to change that. It's a collaboration with the University of Washington School of Medicine.

"We said let's take a great research institution that has strong roots in kidney disease treatment and a great community-based treatment center with thousands of patients who want research and want to be involved in clinical trials to try the latest and greatest, and put it together, and then invest through donation support so that the head of the Kidney Research Institute can answer the big questions. Not research on the margin, but fundamental big questions like what causes kidney disease, how can we slow it, and how can we do dialysis better?"

50 studies are underway right now involving patients, Spaeth said. 700 publications have come out over the past 8 years because of the institute's work, she added.

On October 29, 2016, Northwest Kidney Centers will hold a major fundraiser to raise money for research that's not covered by grants. The Discovery Gala will be held at the Hyatt Regency in Bellevue.

"I can look into the future and see them going further," Spaeth said.

Spaeth is living proof that someone can thrive with chronic kidney disease. Her history includes numerous stints on dialysis and 4 transplants, including one from her brother.

At 68 years old, Spaeth is excited to see what the future holds.

"I'm very hopeful that I can continue to ride this wave," she said.

Article Resources:http://komonews.com/