From kidney disease to DACA, uncertainty besets Minnesota brothers


 

Carlos Villafan Priego’s predawn arrival at the hospital has a deceptively routine feel: stepping on the scales, the rundown of current medications, the blood pressure cuff above his forearm tattoo that reads “Familia.” But on the other side of a curtain, Jeremy Villafan Priego, Carlos’ younger brother, is preparing to give him his right kidney.

In the weeks before the surgery, the 25-year-old Carlos grappled with mixed emotions over Jeremy’s gift. Three years of thrice-weekly dialysis had taken a toll, but his routine was now familiar. He felt he finally had some control over the mysterious autoimmune disorder diagnosed in junior high — a few years after the brothers trudged across the U.S.-Mexico border in the night.

Then, a White House announcement cast another layer of uncertainty: The government said it was phasing out Deferred Action for Childhood Arrivals, or DACA, an Obama deportation reprieve program to which Carlos owed a fledgling career as an electrician — and his employer health insurance plan.

Carlos and Jeremy consider themselves unlikely spokesmen in the high-pitched DACA debate, in which critics decry the program as endorsing illegal immigration. The brothers are not the doctor- and lawyer-to-be Dreamers they see in the media, eager to lobby and protest. They are blue-collar family men, wary of the spotlight. With the surgery looming, they wavered about lending their tale to the debate.

“DACA is a privilege,” Jeremy says. “We are thankful for everything we got through the program.”

A diagnosis, and a reprieve

For a few minutes that morning at the University of Minnesota Medical Center, Carlos and Jeremy sit alone in their beds on each side of the curtain, silent in their own thoughts. Then, their parents, Concepcion and Bulmaro, and Jeremy’s wife, Brandi, rejoin them, and a flurry of nurses and staff stop by, asking a battery of questions. The operating room nurse inquires who the donor is, then turns to Carlos’ parents with a sympathetic smile: “Oh my gosh, so you guys have two patients today?”

Jeremy was 6 when he came to Minnesota. Carlos, his self-appointed protector, was 9. Their parents, from a small farming community in Mexico’s Puebla state, had come two years earlier, leaving them and an older brother with a grandmother until they could get a foothold. Arriving in the north Twin Cities suburbs with little knowledge of English, the boys set out to get the hang of school in America.

When Carlos joined his junior high soccer team, he took a mandatory physical. High levels of protein in his blood set off alarms, and he took more tests, then a kidney biopsy. The diagnosis was IgA nephropathy, or Berger’s disease, an incurable condition in which immune system antibodies damage the kidneys. Its causes are unclear. With medication and monthly checkups, Carlos could avoid serious complications. But the specter of kidney failure would follow him.

By high school, Jeremy and Carlos — always close — were headed down different paths. At Champlin Park High, Jeremy took college-credit classes and enrolled at St. Cloud State University. Carlos took on more shifts at a grocery store until he fell woefully behind on credits. Without papers, it seemed, ambition and hustle would only get him a minimum-wage job. But Concepcion stayed on his case, and he graduated.

Then DACA came along, granting two-year work permits and deportation protection to some who had come to the United States illegally as children. After qualifying for the program, Carlos heard about a shortage of electricians; he started an apprenticeship and landed a good job.

“I went from working at McDonald’s to being on my way to having a career,” he said.

But in the years after high school, Carlos had neglected his condition. He felt great, a classic young invincible. He had a son. He juggled two jobs for a while. He didn’t have health insurance. When he finally returned to the clinic for a checkup, he found out his kidney function was down to 25 percent. He went on dialysis and onto the lengthy waiting list for a donated kidney.

Right away, Jeremy felt he had to do something. But he and Brandi, his high school sweetheart, had just had a baby and returned to the Twin Cities, where he found work at an auto parts distribution center. The timing wasn’t right.

The birthday gift

Just after 8 that morning at the hospital, its time to wheel Jeremy to the operating room. The staffers pull back the curtain shielding Carlos’ bed and park Jeremy’s gurney across from his older brother. Jeremy makes a peace sign.

“I love you, man,” he says.

“Hey guys,” he calls out to the blue-scrubbed nurses looking on. “I love this guy.”

“Thanks, man,” Carlos says. “You are the real hero here.”

About a month earlier, Jeremy had called Carlos and said he was coming over to give him a present a few days ahead of his birthday. When Jeremy arrived, he handed Carlos a can of kidney beans, then explained: He had found out that day he was a match to give Carlos a kidney. He and Brandi had decided it was time to help.

They were stable financially. Besides, DACA had allowed Jeremy to do something he didn’t think possible: apply for a green card, the document that grants immigrants permanent residence and a path to citizenship. In May, he got special permission to travel back to Puebla and see a dying grandfather. His return “cured” his earlier illegal entry and allowed Brandi to sponsor him — a loophole for DACA recipients with U.S. citizen spouses that has angered opponents of the program.

When Jeremy first told Concepcion about his decision, she was taken aback.

“You don’t have to do this if you are not sure,” she told him.

Jeremy was sure. Carlos was not: After learning to live with dialysis, did he want fresh upheaval? Still, the stats from Dr. Erik Finger, his University of Minnesota Health surgeon, were stark: A patient on dialysis who has a transplant increases his life expectancy threefold.

Then, the week before the surgery came the Trump administration’s DACA announcement: Faced with a lawsuit threatened by a state coalition arguing the program is unconstitutional, the government would wind it down, giving Congress an opening to come up with a fix. Carlos’ work permit would expire in October 2018.

Jeremy was scared: What if Carlos loses his job and health insurance? What if he has to return to Mexico? At an appointment with his immigration attorney, Khanh Nguyen, days before the surgery, he asked once again: Could there be an option for Carlos to legalize his status? Most likely no, Nguyen replied.

But for the family, preparations for the surgery muffled the DACA debate to a distant echo.

“For me right now, the most important thing is their health, whether they are here or in Mexico,” says Concepcion.

When it’s time for Carlos to be wheeled to the operating room, he feels peaceful. Concepcion steps up to the gurney and hugs him. She presses her lips to his forehead through the plastic cap and lingers there for a few extra beats.

Embracing uncertainty

The hours in the family waiting area tick on, punctuated by matter-of-fact updates: Jeremy’s kidney is ready for the transplant; Carlos’ incision is made; the new kidney is in, nestled by the old one. The transplant went smoothly, the surgeon says. That evening, Carlos’ body produces urine for the first time in three years.

The following days, Jeremy and Carlos hobble with their IV poles to visit each other in the middle of the night, craving the comfort of family. They go home that weekend, and family rallies around them at their parents’ home: the smell of freshly baked pumpkin muffins, a cheery din around the kitchen table, Carlos’ 4-year-old offering his shoulders as support for trips to the bathroom.

Jeremy eagerly catches up on congressional efforts to help out Dreamers. But Carlos tunes out that news for now. He knows he has to make peace with a measure of uncertainty in his life, sustained by anti-rejection medications that can cost $14,000 a year or more without insurance.

When it comes to DACA and his health, he says, “I just have to hope for the best.”

 

 



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