Connected by kidneys: Valley family shares stories of giving, receiving gift of life
By EMILY BENNETT
ebennett@yourmvi.com
Tracie Sivak said her family doesn’t give each other candles for Christmas. They give kidneys.
“We joke all the time about asking people what their blood type is,” she laughed.
Across their lives, nearly early every member of Sivak’s extended family has either donated a kidney to another family member, or been in need of one.
“We have three living kidney donors in our family,” she said, flanked by four female family members at her dining room table in her Rostraver home.
The women poised around the table surrounding Sivak were Tiffany Evon-Moore of Florida, Amber Evon, Sandy Evon, both of Star Junction and Deb Keefer of Belle Vernon. All five women have been touched by varying kidney diseases, cancers and afflictions — either through a spouse or family member, or for three of them, from personal experience.
Tracie and Sandy are sisters, and for them, these illnesses date back decades. When they were alive, their parents Robert and Theresa both received kidney transplants. Later in life, Sandy’s mother-in-law had to go on dialysis.
Their brother Bob was also a three-time kidney transplant recipient. Of the three transplants, one came from his sister and one came by way of his wife, Keefer. Tracie’s husband was put on dialysis and later passed away. Sandy’s daughter Amber had to go on dialysis and then went on to receive a kidney transplant 10 years ago; she received her kidney from her father, John.
Evon-Moore contracted sepsis and was close to death. Her daughter Hailey was born with a kidney condition that causes narrowing in her urethra.
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.
Tracie and Sandy have another sister, who left the area in 1973 for college. The sisters said their sister went on to live in Georgia, where she has remained untouched by all varieties of kidney disease. They said her children are all very healthy. All three of Sandy’s children have autoimmune diseases.
Sandy, in particular, said she feels the sickness in her family is related to the southwestern Pa. environment they’ve spent most of their entire lives living in.
“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.”
This secret, she said, could be related to plenty of factors, including water and air quality.
Debbie, who donated her kidney in 2005 to her husband Bob (Sandy and Tracie’s brother), said the environment could play a factor, but of course it could be genetic — even though while the time her husband was alive, most doctors assured the family their ailments were not guaranteed to be genetically related.
“This particular group just has very weak kidneys,” she said.
Doctors told them it was the luck of the draw that five family members could all have similar kidney diseases – but not the same ones. Until Sandy switched hospitals, she had never been told that this connection could be a genetic disposition to the disease.
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 environment had influenced his conditions.
The family said other common contributors to kidney-related illnesses are unresolved staph infections or even strep throat contractions. Consistently taking too much Advil or Motrin can also have the same effect.
Sandy has been sick for three years. During this time, eight people have offered her their organs. Those are good odds, but every individual was turned down because the donors themselves were too sick — ranging from diabetes, high blood pressure to heart disease.
“They weren’t well,” she said. “Illness is just running rampant because of where we live. Everyone’s had something wrong with them.”
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. The family put on a party the week of Sandy’s transplant to celebrate the phase of newness.
“I’ll let you know how it feels when I wake up tomorrow,” she laughed.
Her daughter Amber, however, knows exactly what it feels like to get a new kidney, having gone through the exact same thing almost ten years before her mother. She said while she celebrates that her mother is getting a transplant, it’s difficult for her to draw on those memories of “being on the other side of the bed” a decade before.
“You literally wake up and you feel amazing,” Amber said of getting a transplant. “It’s hard to remember being on the other side of the bed,” she said, emotional.
Evon-Moore, who lives in Florida with her family, said that unlike other chronic illnesses, kidney-related problems take a backseat in the spotlight. She said it is related to the fact that most dialysis patients or individuals with kidney disease don’t physically appear to be ill most of the time. She expressed frustration that kidney disease is not a cause that is publicly fought for or embraced.
Sandy said many people have told her she doesn’t even look sick.
Above all adversity, they are a family that values a sense of humor, joy, faith and reverence — and they take pride in finding jubilation amidst trial.
In 1979, three members of their family were in the hospital at the same time. They capped off the tale by saying there was a wedding in the family that year.
While Amber was sharing her transplant story, tears in her eyes, they jolted to a stop to remark on a big, beautiful cardinal looking into the dining room window. They erupted into joyous laughter, marveling at the little creature.
Tracie jokingly noted all their friends think they want their kidneys. Sandy added this has legitimately happened to her. More laughter.
If they could educate the world on kidney-related issues, they would have to write a book with the wisdom they’ve retained from going through diagnosis after diagnosis, bad news after bad news, surgery after surgery. On top of their desire to educate potential donors about the realities of what a contribution is, their other wisdom is a little less pragmatic and a whole lot warmer. The consensus was that each day should be filled with purpose, kindness and understanding for others — one, because you never know if you’re going to need somebody’s kidney, and two, because you never know what battles people are facing.
“You should always be kind to everyone, because 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 that as friends, they naturally split apart as they grew older, but eventually reconnected. Sandy said her donor told her that she always remembered that Sandy was kind to her. Her friend asked that she not be identified.
“From my first experience with Bob, and getting him 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 just have no idea how fragile life is. That’s kind of how we operate. Turn the page.”