Many families establish giving traditions, but a northern Minnesota family exceeds most expectations for generosity. Their gift — from sister to brother, uncle to nephew, and cousin to cousin?
Their story began 27 years ago, when John MacIntyre, then in his 30s, struggled to keep up with his wife, Crystal, and their two children. Eventually overwhelmed by fatigue, MacIntyre underwent testing that revealed Alport syndrome, a rare genetic kidney disease.
Unknowingly, his biological mother carried the disease. The family originally thought her death at 35 was from a heart attack.
After his diagnosis, genetic testing determined that other family members also had Alport syndrome, including his three nephews. According to the National Kidney Foundation, 90% of males with Alport syndrome develop kidney failure by age 40. In females, kidney disease develops more slowly and less often.
For 10 months, MacIntyre stayed alive on dialysis. Then his sister, Diane Douts, of Powers Lake, N.D., stepped in.
In 1996, at the University of Minnesota Medical Center, Fairview, MacIntyre received Douts' kidney and a new chance at life. Now 59 and living in Elk River, MacIntyre celebrates 27 years with his sister's gift.
But at the time of his transplant, MacIntyre felt guilty. He knew his nephew, Troy Dahl, then in his early 20s, also would need a kidney. Should his sister have reserved her generosity for Dahl?
MacIntyre needn't have worried. In stepped his stepbrother Brad Sandbeck. Only one year apart, Sandbeck and Dahl shared summers in northern Minnesota and a brotherly relationship. Testing revealed Sandbeck was a direct match.
In 1999, also at the U Transplant Clinic, Dahl accepted his uncle's gift. Sandbeck, now 50 and living in George, Iowa, said he never hesitated to undergo surgery for his nephew.
"I was excited I could help Troy stay alive. I had two kidneys, and he needed one that I didn't need."
Most of us are born with two kidneys, but we only need one to adequately filter blood of waste and toxins. That's what allowed Douts and Sandbeck to remain healthy while also freeing their family members from often years-long donor waiting lists.
Today, Dahl's cousin Jeremiah Bartel, 37, survives on dialysis. Like others before him, he inherited both Alport syndrome and the kindness gene.
When approached by a local news station, Bartel of Beaver Bay suggested they feature his cousin Connor Clark's instead. Soon after, Clark, 22, received a kidney from the deceased donor list.
And Bartel? Enter cousin Heather Gretschmann, 40. During a visit, she noticed that typically gregarious Bartel couldn't keep up with his 6- and 9-year-old sons.
In the family tradition, Gretschmann pursued donation.
Unfortunately, her blood type did not match Bartel's, so she entered the paired exchange program. This program, like a kidney swap, will enable her to donate to a stranger so Bartel can receive a kidney from another person in the program.
"We didn't grow up with a lot, but we always knew we had each other," Gretschmann said. "This is just the right thing to do."
Gretschmann and Bartel's surgeries will take place in May.
Donating a kidney — directly to a family member or friend, or through the paired exchange program — begins with an evaluation. Donors must be 18 years or older with two healthy kidneys. After confirming that the donor's blood type is a match and their physical and mental health are strong, the transplant clinic sets a date for the minimally invasive laparoscopic surgery. The recipient's insurance covers the evaluation and surgery costs.
The three-hour surgery is followed by a two- to three-day hospital stay. After a six-week recovery, donors typically have no activity restrictions.
Mallory Olson, executive director of the National Kidney Foundation serving Minnesota, said this family's giving tradition is unusual.
"I have heard of situations like this, where there's a genetic disorder in the family and those who are in good health donate to the others. That being said, these are rare diseases, so that doesn't happen a lot. In my five years at the foundation, I have heard similar stories maybe two or three times."
A collective sense of humor also sets this family apart. MacIntyre, for example, created a tongue-in-cheek hospital video, posing as a Jell-O connoisseur. He rated each serving for clarity, taste, the jiggle factor, and degree of slurpiness. His video launched a new family tradition. Dahl made his own version when he received his kidney from Sandbeck . And Bartel is gearing up to star in his Jell-O video soon.
Tai Mendenhall, professor of family social science at the University of Minnesota and a medical family therapist, helps families navigate chronic illness. While he doesn't know this family, he underscored that the burden of chronic illness lightens when family structures are healthy.
"Chronic illness isn't an individual thing. It takes place in the context of the family who loves you. So, if people can be in it together, better outcomes will follow."
For the next generation of this family facing a future with Alport syndrome, the built-in support is comforting. Bartel's sisters, Jessica Beech and Shanda Bartel, are both Alport carriers and mothers to sons who have the diagnosis.
"I'm glad our boys will have their uncle there to say, 'It's going to be OK,'" Shanda said.
Sandbeck agreed. "There is always going to be someone who will step up. It's always been that way, because we take care of each other."
Jennifer Cramer-Miller is a Minneapolis freelance writer and author of the forthcoming book, Find Some Joy, Dammit! A Memoir of Incurable Hope.