The hardship of kidney failure

BY HOLLY KESTENIS, Staff Writer

ST. PETERSBURG – Life can be difficult at times, but if you look around, really get to know people and their circumstances, you may start to see that some seemingly ordinary people are living through some extraordinarily difficult situations.

Janice Starling worked as director of her family-run daycare facility and was active in the St. Petersburg community. Although she had high blood pressure, she made sure to take her prescribed medication dutifully so that health issues wouldn’t slow her down. But little did she know that the very pills she was popping were killing her kidneys.

Diagnosed in 2002 with kidney renal disease, in which her kidneys literally shut down, Starling was shocked.

“I was going to the bathroom, I was urinating,” she told her doctor. Starling hadn’t thought anything was wrong – until it was too late.

Like so many other Americans with Chronic Kidney Disease (CKD), Starling was too busy to see the subtle warning signs: changes in urine, swelling, fatigue, skin rashes, and a metallic taste in the mouth, just to name a few. With an active lifestyle almost anyone could have most of the symptoms on the list and blow them off as something less serious.

But for adults with diabetes and high blood pressure, the risk is greater for developing CKD and ultimately full-blown end-stage renal disease (ESRD). And if you’re African American you’re almost four times more likely to develop ESRD than your white counterparts. Hispanics are about one and a half times more likely to come down with the disease. When you have ESRD you need dialysis or a kidney transplant to survive.

That’s what happened to Starling, already losing kidney function, she went on dialysis. Throughout her nearly 14 years having needles shoved in her skin and machines flushing out her waste products to clean her blood, she was ready for her own again.

But the road to receiving a kidney, or any needed organ, isn’t that simple and for Starling it proved over the years to be downright impossible. Soon after being diagnosed with kidney failure her doctors made another startling discovery. They believed they had found a mass in her breasts.

“I said go ahead and do the mastectomy because if you have any kind of cancerous cells in your body, they won’t give you a transplant,” explained Starling. And although it was fortunate for her that the mass turned out to be benign, within the next few days it became clear something else was wrong.

“When they removed them the doctor left a capillary open that caused me to bleed,” she said. “I ended up getting over 30 transfusions which limited my chances of getting a transplant.”

Year after year Starling watched as friends and acquaintances in her inner kidney circle were called up for transplants. Why not her? Others had been on the list less time than her; she often wondered when it would be her turn.

Turns out Starling had an absurdly high level of antibodies still in her system from the many blood transfusions she underwent years earlier. In 2010 she attended a workshop and found there was a special medication that could reduce her high level of antibodies and make her a candidate for a transplant.

The problem, Medicare hadn’t approved it for use in dialysis patients at that time, so Starling patiently waited, asking at every checkup when she’d be cleared to take it. Finally in 2012, two years after initially hearing about the drug, the paperwork went through and Starling was able to get a cadaver kidney from a recently deceased donator this past December.

“I’ve had a lot of operations before, but this was the most intense,” she said describing the unbearable pain she felt upon waking from surgery. “I was like ‘Oh God, what is going on?’  It was painful, it was really intense.”

Today, some five months later, Starling is trying to take it all in and attempting to get back to some semblance of a normal life. But there are a lot of small things that most of the world takes for granted, like the pleasure of eating a piece of fruit, or the ability to urinate on your own without the help of a machine that she has to get used to doing all over again.

“On dialysis you can’t drink or eat a lot of fruit,” Starling made clear, warning others to monitor levels of potassium, phosphorus, and salt in their diet. The amount of daily fluid also must be limited each day because the body is not able to void it. “The machine goes to the bathroom for you, the more you’re on the machine, the more it takes over.”

Still not strong enough to head on back to work, Starling is focusing on getting healthy, eating right, walking every day without getting tired, and of course taking her daily medication to help her body not reject the organ that is giving her a new lease on life.

Through it all what perhaps is most astounding is Starling’s mandate for the future, to give back to other patients.

“Just because you have end stage renal disease it’s not the end of your life,” she said. “It’s just the end of your kidney function.”

Starling has started a support group entitled All Kidney Patients Support Group, and plans to hold her first seminar on May 22 from 11-2 p.m. at Sylvia’s Restaurant, located at 642 22nd St. S., St. Petersburg. Lunch will be provided and Starling, along with her guest speakers, will embark on their mission to transform the kidney community through encouragement and support services such as rectifying transportation issues.

“That last week in the month, some people may not have enough money to get back and forth to the clinic,” said Starling who hopes to set up a way to help patients out, along with coordinating backup care partners for those on home dialysis.

Even recovering from her kidney transplant, Starling remains active in such organizations as Dialysis Patient Citizens where she speaks, along with her fellow members, in front of Congress raising kidney awareness and fighting for laws that will benefit those suffering from end-stage renal disease.

Starling encourages the community to get involved whether a sufferer themselves, or a friend or family member of someone with kidney disease. Check out dpc.org for more information on what is currently being done and what you can do to advocate for those who may be too sick to have their voices heard.

Janice Starling is a graduate of Dixie Hollins High School, has been married for the past eight years and holds a BA in Education from Nova University and an MBA from the University of Phoenix.

To reach Holly Kestenis, email hkestenis@theweeklychallenger.com.