Sherri Robins learned two years ago that her kidneys could no longer filter the toxins in her blood, a condition that had sickened her for weeks.
Already a cancer survivor, she knew she would fight kidney failure for the rest of her life. She just didn’t know what that meant.
“When you first think about it, you think about dying, death. It’s the end of your life,” she said. “I was thinking, ‘I just can’t let this get me down. I can’t let my family see this get me down.’”
Robins, 38, now spends 12 hours a week at Claremore’s DaVita clinic attached to a machine that cleans her blood and returns it through a tube in her arm — a treatment called hemodialysis that will keep her alive for years.
She’s one of 400,000 dialysis patients nationwide and 4,085 in Oklahoma, where nurses and patients are asking lawmakers and people with risk factors like diabetes to take note of kidney failure during the National Kidney Foundation’s Kidney Awareness Month this March.
“We’ve had people drive past us for 10 years and have no idea what we do or what kidney dialysis is,” said Caye McClellan, facility administrator. “I think most of our new patients are scared of dying because they just don’t know.”
The story is too common: Nine years ago, former patient Tina White felt sick for days, a result of the toxins her kidneys weren’t removing. She even had a seizure while driving.
Although dialysis cured her nausea, its four-hour treatments three days a week threatened to overrun the life it sustained.
And like all those with kidney failure, White had to limit intake of liquids and avoid dairy, bananas and other foods high in potassium, which is filtered from the blood by the kidneys.
“I didn’t really think I was going to die, just be sick for a long time,” she said. “I just didn’t know what was going to happen next or how I was going to take care of my two kids.”
Some survive more than 20 years with treatment, but the energy-draining effect of dialysis keeps many from doing even menial tasks, let alone holding fulltime jobs.
Robins hasn’t worked since her treatment began, and now lives with her mother.
“When you’re on dialysis, you lose interest in everything,” said Tom Fossa, a third-year Claremore patient. “I don’t even feel like taking out the garbage sometimes. You don’t have the strength.”
Now a secretary at the Claremore clinic, White’s routine returned to normal when her mother donated a kidney, an option not available for those who don’t have a compatible family member.
For them, Robins included, it can take years to receive a transplant. Dialysis is their only other option, and patients want lawmakers to know it.
Proposed cuts to state and federal healthcare programs threaten clinics’ abilities to transport rural patients and may force more patients to pay for treatment once covered by Medicaid.
“I wish they would take the time to go to the clinics and see what’s going on, that it’s not just one or two people who face the rising costs,” Robins said. “We’re not dying. We’re still here.”
Fossa plans to attend what he calls a kidney rights rally in Washington to push that point. He said patients have enough to worry about without losing Medicaid support.
He still remembers the days following his diagnosis with Chronic Kidney Disease, the precursor to kidney failure.
“I thought I was dying. It’s a terrible, terrible fear,” he said.
Once patients adjust, most enjoy their treatments because they can sleep, talk to each other, visit nurses and read, Fossa said.
Fossa serves as the clinic’s volunteer political ambassador and patient advocate, so he speaks one-on-one with new patients to let them know dialysis is not the end of their lives — just a change. He offers emotional support and personal experience new patients feel they can’t get from nurses.
“There are so many questions they ask,” he said. “Their concerns are if they are going to die. It’s terrible.
“I find it so rewarding when you can help a person. It’s so priceless, so rewarding.”
Fossa says patients quickly warm up to the Claremore clinic and its nurses. He calls them his “sweethearts.”
Patients say they are like family who care for patients as if they were their sons, daughters and parents.
With a mischievous grin, Robins said she likes to bother them. She’s even begun to look forward to her treatments — maybe for that reason alone.
“There’s a reason why I’m still on this Earth, even if it’s just to torment these people,” she said. “They’re wonderful.”
As for dialysis itself, Robins has a simple outlook: It’s life or death.
“You can live many more years. It doesn’t have to be the end,” she said.
DaVita nurses are urging awareness of kidney disease risk factors, which include diabetes, obesity and high blood pressure. McClellan said diabetes patients should take their doctor-prescribed medication and have regular checkups.
And everyone should care for their kidneys by exercising, drinking plenty of water, monitoring blood pressure, avoiding smoking, limiting dietary sodium and regularly visiting a doctor, McClellan said.
Most of the 31 million Americans with Chronic Kidney Disease don’t know they have a disease that is 12 times more prevalent than breast cancer in the U.S., according to a DaVita report.
Nearly 70,000 Americans die each year from causes related to kidney failure, some who never sought treatment.