Lifestyle change, kidney meds offer hope for mother
Cherokee Nation citizen Shaye Coombes, of Watts, suffers from polycystic kidney disease, a genetic disorder that can cause serious complications, including kidney failure. COURTESY
WATTS – Facing dialysis to fend off kidney failure, Cherokee Nation citizen Shaye Coombes shunned an unhealthy lifestyle for a treatment she hopes could help other Cherokees, including her daughter.
Coombes, 30, and her youngest daughter have polycystic kidney disease, a genetic disorder associated with fluid-filled cysts and the loss of kidney function over time. According to the Mayo Clinic, PKD can cause complications such as high blood pressure and kidney failure.
PKD International states the disorder affects more than 12 million adults and children worldwide. “Over half of those affected will have kidney failure by the time they are 60 years old,” the organization notes. “Many will experience regular pain, disability and anxiety throughout life.”
The first treatment designed to slow the disease – a drug called Jynarque, aka tolvaptan – was approved by the U.S. Food and Drug Administration in 2018, providing hope to Coombes, a licensed nurse now in her second year of taking the medication.
“Our kidneys enlarge. They’re covered in cysts from the inside out,” Coombes said. “What this medicine does is it shrinks them and reduces the number of cysts so you’re not in as much pain. It puts it kind of like in a remission.”
Coombes remains on the medication because “it’s still working,” she said.
“It’s slowed it down. I should have already been on dialysis a year ago,” she added. “So, it’s doing what it’s supposed to do.”
Unlike other genetic diseases, PKD does not skip a generation, often affecting many people in one family, according to the Polycistic Kidney Disease Foundation.
“My mom has it,” Coombes said. “My grandmother had it. My great-grandmother had it and my youngest daughter has it. It’s really genetic, like each child has a 50% chance of getting it.”
Coombes’ 7-year-old daughter, Cloie, the youngest of three children, is in the disease’s early stages.
“They think she’ll be in her 20s whenever she goes into kidney failure,” Coombes said. “For me, it’s like me being on this medicine is allowing them to work its kinks out, figure out what needs changed here and there. It’s a lot of work and it’s exhausting. But I think one day it could possibly lead to a cure for it.”
Diagnosed at age 10, Coombes said the disease had progressed to the point of kidney failure as she was starting nursing school just before her 27th birthday.
“I hadn’t been taking care of my health,” she said. “When I was a kid, I went to the doctor because my mom took me. But once I turned 18, I never went back to the doctor and I got really, really sick. I went to the ER, and they told me my kidneys were shutting down.”
At that point, Coombes learned about the medication, but it took her more than a year to get approved.
“There had never been a medicine for our disease ever,” she said. “But they denied me, said I wasn’t a good candidate for it because I was really unhealthy. I had uncontrolled blood pressure. I smoked about a pack and a half of cigarettes a day. I took opioid painkillers every day. I was anorexic. There was just a lot of things I wasn’t taking care of.”
With dialysis as her remaining option, Coombes improved her health in hopes of becoming eligible for the new drug. “They gave me six months, so I quit smoking cold turkey. I quit taking pain pills cold turkey, I gained 20 pounds,” she said. “I come back, and they were like ‘this is a completely new person,’ so they approved me.”
Despite the approval, Coombes hit a financial roadblock.
“It costs about $15,000 to $30,000 a month to take this medicine,” she said. “Of course, I couldn’t afford that so they suggested me to a patient assistance fund program, and they told me no for another six months. Then finally they approved it.”
While there are benefits for Coombes, there are risks involved with taking Jynarque, which carries with it a warning for serious and potentially fatal liver injury. According to the drug makers, the most common side effect is thirst and increased fluid intake.
“When I first started taking it, it was really hard on me,” Coombes said. “I was so thirsty I think I drank probably 30 bottles of water a day. It makes you pee and you flush everything out. So it’s basically filtering your kidneys for you.”
In general, she said, “It’s really an amazing medicine, but people don’t know about it.”
“I have multiple family members with this disease that aren’t doing anything to treat it,” Coombes said. “Tons of Cherokee citizens have this disease. My grandmother, there were nine of them and four of her siblings had it. I had an uncle with it who lived on dialysis for 11 years before he passed away. Then I have a cousin that passed away from it a couple of weeks ago and she was 38.”
A notable Cherokee who also suffered from the disease was the late Principal Chief Wilma Mankiller.