Tracie Sivak said her family doesn’t give each other gifts under a tree for Christmas. They give kidneys.

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“We joke all the time about asking people what their blood type is,” she laughed. 

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Across their lives, nearly every member of Sivak’s extended family has either donated a kidney to another family member or been in need of one.

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“We have three living kidney donors in our family,” she explained, flanked by four female family members at her dining room table in her Rostraver, Pennsylvania home.

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The women poised around the table surrounding Sivak were Tiffany Evon-Moore, Amber Evon, Sandy Evon, and Deb Keefer. All five have been affected by varying kidney diseases, cancers and afflictions — either through a spouse or family member, or for three of them, from personal experience.

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For sisters Tracie and Sandy, these illnesses date back decades. When they were alive, their parents both received kidney transplants. Later in life, Sandy’s mother-in-law went on dialysis. 

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Their brother Bob was a three-time kidney transplant recipient. Of the three transplants, one came from his sister and another by way of his wife, Keefer. Tracie’s husband was put on dialysis and later died. Sandy’s daughter Amber was on dialysis for a period, going on to receive a kidney transplant 10 years ago from her father. Evon-Moore contracted sepsis and was close to death, and her daughter Hailey was born with a kidney condition that causes narrowing in her urethra.

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After seeing her daughter Amber endure the agony of dialysis and a kidney transplant at the age of 29, Sandy now faces a kidney transplant for herself. Yesterday was the first day in three years she hasn’t been on dialysis. Today, she will receive a new kidney. 

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Tracie and Sandy have another sister, who left the area in 1973 for college and later moved to Georgia, where they say she remains untouched by any and all kidney disease or affliction. Her children are all very healthy, they insist. All three of Sandy’s children in Pennsylvania have autoimmune diseases.

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Sandy, in particular, said she feels the sickness in her family is related to the southwestern Pennsylvania environment they’ve spent most of their lives in. 

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“There’s too many people sick,” she said. “I mean really normal, healthy people getting really, bad sick. In Allenport, the Mon Valley, I mean everywhere you look there’s someone sick. It’s not just us. It’s like there’s a secret.”

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This secret, she said, could be related to plenty of factors, including water and air quality.

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Debbie, who donated her kidney in 2005 to her husband Bob (Sandy and Tracie’s brother), said the environment could play a factor, but genetics can’t be dismissed — though while her husband was alive, she said most doctors insisted their ailments could not be guaranteed as genetically related. 

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Doctors called it the luck of the draw that five family members could all have similar kidney diseases - but not identical diagnoses. Until Sandy switched hospitals for specialized care, she said a doctor had never suggested a connection could be tied to a genetic disposition.

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​According to the National Kidney Foundation, there are over 60 types of inherited kidney diseases, ranging from rare diseases to common afflictions, and it’s estimated that genetic changes are responsible for about one in five cases of kidney disease, according to research from the American Kidney Fund. Changes in just one gene can be responsible for passing down the disease, but that doesn’t quite explain the connections between their non-biological, extended family members with the same diagnoses. 

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Debbie’s husband Bob was a painter, and in the teaching hospital that he frequented during his 25-year long battle with his illnesses, he was told there was a chance that his chronic occupational exposure to chemicals had influenced his health. 

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It’s been suggested that exposure to organic solvents found in paint could play a role in the impairment of kidney function, which may progress to kidney failure. According to research cited in scientific research journal SCIRP, this has not been evaluated with a proper analytical study. 

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The family said other common contributors to kidney-related illnesses are unresolved staph or strep throat infections. Advil or Motrin overuse can also have the same effect, too. 

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Sandy has been sick for three years. During this time, she’s been offered eight organs from eight different people. Those are good odds, she said, but all offers were denied due to donors themselves being too sick — ranging from afflictions like diabetes, high blood pressure and heart disease.

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“They weren’t well,” she said. “Illness is running rampant because of where we live, I think. Everyone’s had something wrong with them.”

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Sandy said she hasn’t quite processed the significance of today — that she’ll wake up with a new organ, and what she refers to as “new life,” thanks to a generous friend. 

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“I’ll let you know how it feels when I wake up tomorrow,” she laughed.

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Her daughter Amber knows exactly what it feels like to get a new kidney, having endured the same trauma nearly ten years before her mother. While she celebrates her mother’s transplant, she said it’s difficult to draw on those memories from a decade before. 

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“You literally wake up and you feel amazing,” Amber said, emotional. “It’s hard to remember being on the other side of the bed."

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Evon-Moore, who lives in Florida with her family, said unlike others, kidney-related problems take a backseat in the chronic illness spotlight, not that she sees it as a competition. Most dialysis patients or people with kidney disease don’t physically appear to be ill most of the time, she said, expressing frustration that kidney disease is not a cause commonly advocated for in the public healthcare sphere. 

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Sandy echoed this sentiment, adding lots of people have told her she doesn’t look sick.

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Call it what you will—bad luck, bad water, bad genetics—above all adversity, their family values a sense of joy, humor, and good faith — and they take pride in focusing on what’s promising, good, and positive. 

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In the late seventies, three members of their family were in the hospital at the same time. They capped off the tale by talking about a wedding in the family that year. 

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Tracie noted all their friends think they want their kidneys. Sandy added this has legitimately happened to her. Belly laughter from the entire table. 

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To educate the world on kidney-related issues, they’d have to write a book with the wisdom they’ve gained from their respective journeys. They’ve got lots to share with people on the realities of what it is like to actually contribute an organ to someone, for instance. But their day to day advice is less pragmatic, but a whole lot warmer, and definitely a little funny. 

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Fill each day with purpose, kindness, and a devoted understanding for others — one, because you never know what people are facing, and two—you never know when you might need somebody’s kidney. 

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“You never know when you’re going to need someone to save your life,” Sandy said, speaking of her long-time friend whose kidney she is receiving today. Sandy said they naturally grew apart as they aged, but eventually reconnected. Her friend, who asked not to be identified, said she always remembered that Sandy was kind to her. 

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“From my first experience with a transplant and getting my husband back for so long, for an extra 30 years of life, all I can say is don’t sweat the small stuff,” Keefer said. “People have no idea how fragile life is. That’s how we operate. Turn the page.”

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