By Mali Main
In 1959, Nancy Spaeth suddenly felt too tired to brush her own hair. The 12-year-old also noticed that her urine had turned a murky, mud color. Her doctor told her she had Bright’s disease, now called glomerulonephritis.
But no one told her that she had chronic kidney failure, that her kidneys were slowly deteriorating inside her, or that there was no known effective treatment.
“It was the custom in those days not to tell the patient what was going on,” recalls Spaeth, now a semi-retired nurse and teacher and grandmother of two.
It took seven years for her kidneys to completely shut down. “Kidney disease is insidious,” Spaeth says. By that time, Spaeth was a freshman at the University of Arizona. She lost her appetite, and the food she did eat would not stay down. She threw up her breakfast in the plants outside her early morning physics class. By the time the doctors sent her home to Seattle she weighed 88 pounds.
Fortunately, Spaeth returned home just when researchers in Seattle were making advances in kidney dialysis that would revolutionize the treatment of kidney failure. Many of those advances were made by researchers working at the Seattle Artificial Kidney Center, the world’s first artificial kidney clinic. The center, now known as the Northwest Kidney Centers, commemorates its 50th anniversary this year.
Spaeth would be among the first patients to be treated at the new center, and, today, she is one of the longest living chronic kidney failure patients in the world, says Christopher Blagg, former executive director of the Northwest Kidney Centers, a retired nephrologist who is writing a book on the history of the center. “She’s probably the only one who’s had every possible treatment during the course of their illness,” he adds.
Spaeth’s physician, Belding Scribner, wanted her on dialysis. Scribner had helped found the Seattle Artificial Kidney Center, but dialysis was an expensive, lifelong treatment and the Center could not accommodate more than a dozen or so patients at a time.
The Center set rigid medical guidelines for patient selection: well-adjusted adults between the ages of 18 and 45 whose kidney disease was uncomplicated by additional health problems.
But with more applicants to the Center than they could treat, anyone who wanted treatment also had to be approved by the anonymous seven-member Admissions and Policy Committee appointed by the King County Medical Society.
Spaeth, standing in the new dialysis museum at the Northwest Kidney Centers’ 700 Broadway, clinic points at a photograph on the wall. It’s a silhouette of a woman and six men sitting behind a long table, their faces obscured by shadow.
“We called them the Life & Death Committee,” Spaeth says. “They were supposed to be unbiased. But Dr. Scribner told me, years later, that he was sometimes able to get his two cents in.”
The Committee considered a variety of factors in making its life and death decision, including the applicant’s profession, whom they might leave behind and whether those left behind would be well-provided for or become a social burden.
Life Magazine and an NBC news documentary publicized their activities, inspiring the field of bioethics.
The committee sent a social worker to interview Spaeth’s family. Spaeth went through two days of psychological testing – during which she remembers they asked multiple variations of the question “Do you love your mother and father?” – before she was approved for dialysis treatment, which she began in 1966.
Spaeth pulls back her sleeve. Her arm is a tangle of scars from the wrist to the elbow. The divot on the inside of her left wrist is the 46-year old scar from the device that changed chronic kidney disease from a deadly illness to a treatable one: the Scribner shunt, an apparatus developed by her physician.
Blagg explains that before 1960 dialysis was only used to treat patients with acute, meaning temporary, kidney failure. Patients had to undergo surgery to be attached to the machine, a process that could only be done a few times. “If they had chronic kidney failure we would stop treatment there and the patient would go home and die,” Blagg says.
The shunt was a semi-permanent installation in the patient’s forearm made of three Teflon tubes.
One was inserted in an artery and the other into a vein, they were connected by a third u-shaped tube. During dialysis this u-shaped tube was removed so the arterial and venous tubes could connect to the artificial kidney.
“It didn’t hurt,” says Spaeth, “Not really. But it got infected a lot.” So she kept her shunt-embedded forearm wrapped in white gauze during the day while she studied for her BA in Education at Seattle University.
Then three nights a week she walked the three blocks to the Center, where the nurses unwrapped her shunt, unscrewed the u-shaped end piece, and connected her to the artificial kidney next to her bed.
While she slept, the device filtered excess salt and fluid from her blood and cleansed it of harmful wastes. In the morning, she would be disconnected and go back to school.
By 1968, Spaeth was able to have her dialysis done at home. She spent the summer of that year at the Coach House, an old motel near the campus where the University of Washington had set up a home-dialysis training program.
“I was always willing to try anything [the Center] was doing,” Spaeth says. “I learned how to run the machine, take it apart, clean it, and put it back together.”
Spaeth pulls back her sleeve further and slides her watch down to her palm. The scars tell the story of the changes in dialysis technology.
The different techniques for coaxing blood from her arteries is evident in the puffy overlapping grafts and the white sinusoidal scar near the soft bend in her elbow.
In 1972, Spaeth had a renal transplant, a gift from her younger brother, Charlie. “He came home from Stanford on his spring break, gave me a kidney and went back to school.”
Charlie’s kidney lasted seven years. Enough time for Spaeth to get married and have two children, a boy and a girl.
Then in 1979, she contracted an infection that caused her to lose the transplant. Her next three transplants were from strangers: a young woman who fell from the ladder of a fishing barge in Alaska, a motorcyclist who died in an accident in Bellevue, and in 2000, she received the kidney she still has today. “It was from a man who was in a car accident near Spokane,” she says.
Sometime between her third and fourth kidney transplant, Spaeth was able to try another kind of dialysis, called peritoneal dialysis, that freed her from the machine. Instead the dialysis fluid, the dialysate, runs into the abdominal cavity through a catheter implanted in her abdominal wall.
To begin the process, she only had to have a place to hang the bag of dialysate. Once connected to the catheter, the fluid from the bag would flow into her abdomen, where the water, salts and wastes would be exchanged through a thin sheet of cells, called the peritoneal lining. When it was time to drain the dialysate, she set the bag on the floor and the fluid would run out.
She lifts her shirt and points to the pinch of flesh on her lower abdomen where the catheter was installed when she switched to peritoneal dialysis. “I liked it,” she says. “It gave me a huge amount of freedom.”
“I could travel, I could do it on the airplanes,” says Spaeth. “I would just find a restaurant in the airport and they would warm [the bag of dialysate] in the microwave for me.”
“I could do it in my brother’s kitchen,” she says with a laugh. “Just hang the bag from a knob on the cabinet and sit there and have a glass of wine.
In the late 1980s, after Spaeth lost her second transplant, she volunteered to be part of a clinical trial of a drug that changed the lives of kidney disease patients.
She and an architect friend had just finished building her new three-story house next to a gully on Mercer Island. “I was extremely anemic,” she says. “I was crawling on my hands and knees up the stairs in that house,” she explains.
Healthy kidneys, in addition to filtering waste from the blood, also secrete the hormone erythropoietin, EPO for short.
“It regulates how many red blood cells we have, and therefore, how much hemoglobin we have,” says Stuart Shankland, who heads the Division of Nephrology at the University of Washington. Hemoglobin colors blood red and infuses the organs with oxygen. “So when a kidney fails, it stops making EPO and you get anemic.”
Without hemoglobin, Spaeth’s cells and tissues were essentially being starved of oxygen.
The pharmaceutical company Amgen chose the late Joseph Eschbach, a senior research advisor at the Northwest Kidney Centers, to run the first human trials of their synthetic EPO.
“Dr. Eschbach had worked on anemia in patients with kidney failure since 1963,” says Blagg. “He was Mr. EPO at that time.”
The Food and Drug Administration approved EPOGEN in 1989. “It was a miracle,” says Spaeth. “After a few weeks, I could run up those stairs.”
Today, Spaeth serves on the board of the Northwest Kidney Centers and travels around the country telling about her experience to the dialysis community. Lyle Smith, continuing education director at the Board of Nephrology Examiners Nursing and Technology, who has arranged for her to speak at professional conferences, says Spaeth is an inspiring speaker.
“In dialysis, we see so many patients who are devastated,” says Smith. “Nancy’s story gives staff hope that their patients can succeed.”
Mali Main is studying Journalism and Quantitative Science at the University of Washington. She is the Newsletter Intern at the Division of Occupational Therapy in the UW Department of Rehabilitation Medicine and works as the Development Assistant at the St. James ESL Program. She has also covered art, astrophysics and healthcare reform.