PHOENIX – He holds out his forearm, pointing to the area right below a bandage near the crook of his elbow. One of his veins is much thicker — it looks like a caterpillar under his skin, but it’s a fistula serving as the entry port for his hemodialysis treatment.
“It’s like they stitch two of your veins together into a Schwarzenegger vein,” he says, crudely explaining how his doctors created the fistula. He is sitting in the living room of his parents’ modest home in Phoenix. Family pictures and signed baseballs rest atop the TV, where a Spanish talk show plays on low volume.
His first name is Paul and he has been on dialysis since he was 2 because his kidneys aren’t able to filter waste, salt and extra water from his blood. Until he was 12, the blood was filtered inside his body, using a special fluid injected through a port in his abdomen. Now, he goes to a dialysis center to have his blood gradually removed, cleaned and returned to his body through the port in his arm.
According to the National Kidney Foundation, patients typically spend three to fiveyears on a transplant list, waiting for a kidney. Paul, who is 21 years old, has needed a kidney for 19 years.
Paul is an undocumented immigrant who has temporary permission to live and work in the United States through an Obama-era program known as Deferred Action for Childhood Arrivals, or DACA. The program gives certain immigrants who were brought to the country illegally as children a reprieve from deportation – and though it also allows Paul to access health insurance, his options are very limited.
Immigration status is not supposed to impact transplant eligibility, but insurance coverage and socioeconomic status do.
Paul has emergency insurance through the Arizona Health Care Cost Containment System, or AHCCCS (pronounced “access”), the state’s Medicaid agency, that pays for his dialysis but does not cover organ transplants. DACA recipients do not have access to the full insurance marketplace under the Affordable Care Act and Paul said he cannot afford the cost of private health insurance, even if he were to qualify for it, given his pre-existing condition.
Paul is worried that sharing his story might jeopardize his placement on the transplant list and endanger his parents, who are also undocumented. He agreed to tell his story as long as he and his relatives are identified only by first name.
Racing against time
Every three days, Paul visits a dialysis treatment center in Phoenix to have his blood filtered through a machine. Since his kidneys failed permanently while he was still in middle school, he has been living without kidneys for over seven years. Because of this, he has to limit his fluid intake to 32 ounces every day.
The hemodialysis will lengthen his life, but Paul is racing against time. He has come close to death twice already. He looks much younger than his age, his 5-foot frame thin and brittle, his large brown eyes often shaded by a snapback cap.
The treatments are hard on Paul’s body. He sometimes sleeps four to five hours after he gets dialysis, and his blood pressure medication has uncomfortable side effects. He recently lost his job at Home Depot because he was feeling too ill to work. College was a plan once upon a time, but he quit school two months shy of high school graduation, when he realized he was short on credits; he had missed a lot of classes when he was hospitalized for three months in eighth grade.
There was a time when Paul believed that his life would get better, that he would gain a level of normalcy that he has never really enjoyed. But the dialysis and the medications, the frustration and the long, long wait he has endured have worn him down.
“I can last up to another 20 to 30 years. There’s no lifespan on the dialysis,” he says. “I just gave up hope already.”
A lifetime of worry
Paul was just a baby when his parents brought him across the border from Mexico. They walked for 15 hours through the desert to reach a “ranchito,” a small ranch, near Nogales, Arizona, where the smuggler they had hired — their “coyote” — had told them to go.
His father began working in construction shortly after arriving in Phoenix. The family wasn’t planning to stay very long, Paul’s mother said. But when he was 2, she realized that something was seriously wrong with her son.
“When I took him to the doctor, they told me that he had pain. Lots of pain,” his mother said in Spanish, through a translator. “The following day, they just continued to do more studies, and they saw that his kidneys were small.” They were too small to do their job as they should.
Paul’s first treatment was peritoneal dialysis, which relies on the lining of the abdomen, or peritoneum, to filter blood. Dialysis solution flows into the area through a catheter and is later flushed out, carrying the impurities that his kidneys couldn’t remove from his blood.
His parents feared that they wouldn’t be able to get Paul proper dialysis treatment in Mexico, so they stayed in Arizona and brought him to Phoenix Children’s Hospital, where he was treated for most of his childhood.
Paul was in eighth grade when his catheter became infected, his lungs filled with fluid and he contracted pneumonia. His breathing became so labored that doctors had to connect him to a breathing machine. His kidneys failed completely and were removed, and he was forced to sleep sitting up so the fluid in his lungs wouldn’t choke him.
“I didn’t think he was going to live because he kept saying, ‘I can’t breathe, I can’t breathe,’” his mother said.
After he recovered, the hemodialysis treatment began. Every three days, he sits for four hours on a chair, a needle in his arm, his blood coursing through a machine that cleans it out and then pumps it back into his body. If he goes for more than three days without treatment, he will become seriously ill as toxins build up in his body, poisoning him from the inside out.
His only salvation is a kidney transplant.
‘If you’re rich, you can get a transplant’
Anne Paschke, a spokeswoman for the United Network for Organ Sharing, or UNOS, the private nonprofit that manages the nation’s organ transplant system, said that immigration status does not impact eligibility to receive an organ transplant.
Ability to pay does, however.
“Besides a detailed medical and psycho-social evaluation,” Paschke said, a transplant center will also “evaluate the patient’s ability to take care of an organ if they get one.” What that means, she said, is “not only the ability to pay for the transplant, but for very expensive immunosuppressant drugs for the rest of their life.”