Woman in need of kidney transplant spreading the word about organ donation

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February 3, 2013
Woman in need of kidney transplant spreading the word about organ donation
By Robb Murray
Free Press Staff Writer

She arrives early and begins the routine. Or is it a ritual?

Step on scale. Wash hands. Make way to chair in corner. Sit.

Nurse Mary Gerndts comes over and says hello. She’s been working with Heather Sandland for about a year now.

On the inside of Sandland’s left forearm is a fistula, a device that facilitates dialysis treatments by allowing easy access for blood to be pulled out, cleaned, then returned.

As Gerndts prepares to insert those needles, Sandland grows uncomfortable. She’s never been a needle lover anyway, and this process will involve three of them.

The first is for an injection of a drug called Lidocain, a process that comes with a little irony. Injected with a tiny needle, its purpose is to numb the skin so that when the big, 15-gauge dialysis needles make their charge, it won’t be as painful.

“This is one of the worst parts,” Sandland says.

Gerndts looks for the right place.

“I’ll just poke around, here, to find the spot,” the nurse says.

Gerndts finds the spot and pokes. As the Lidocain enters her arm, Sandland bows her head, grows silent and grimaces. Within minutes, the other, much-larger needles are in, too. Blood races through a tube and into a sophisticated machine that scrubs the blood clean of anything that shouldn’t be there. The blood is then sent, through another tube, back to Sandland.

The machine — for three hours, three days a week — does the job her kidneys can’t.

Without these visits, she would die.

And eventually, Sandland will need a new kidney. She can’t live forever on dialysis. So to look down the road into her future, where she envisions watching her sons grow and spending plenty of time with them, it’s all dependent on one thing: a kidney transplant.

Unless modern medicine comes up with a way for people to live without functioning kidneys, she’s going to have to find one, whether one comes available via a death or someone comes forward as a match. Until then, dialysis is her way of life.

A quick look around the room reveals Sandland isn’t alone, neither in the dialysis center nor her plight.

“Every patient (undergoing dialysis) needs a kidney,” said Mayo Clinic Health System in Mankato nephrologist Fawad Qureshi. “But not every patient in there can get one.”

Anyone who has had a previous organ transplant is out. Anyone who is obese is normally not a good candidate for a transplant. The very old are typically not good candidates, nor are people with other health concerns, such as heart disease.

The best scenario is a new kidney, but some can’t withstand a surgery. There are 100,000 people on the list for a kidney transplant.

“Most of them won’t get a kidney,” Qureshi said. “And the list is expanding 3,000 to 4,000 patients every year.”

Sandland says she’s hopeful. Her kidney failure was brought on by something called IgA nephropathy, a condition in which high amounts of retained protein do damage to the kidneys over time. Her doctors in the Twin Cities, where she goes for her kidney failure treatment, have told her the average wait for a kidney from a deceased person is about five years.

Asking for help, though, has been difficult for Sandland. She said it’s just not in her nature to aggressively pursue possible donors. So she’s stuck to spreading a more neutral pro-organ donation message.

“It’s hard for me,” she said. “I just try to tell my story and help get the word out.”

Sandland has three sons, ages 22, 15 and 12. For the younger two, they’ve had to figure out how to get up, get dressed and get off to school on their own three days a week.

“It can get hard at times,” she said. “I can’t do what other parents can do.”

Her struggle with kidney failure has meant she’s had to miss a lot of her kids’ activities, including much of her son’s soccer season — “That was really hard. I never miss my kids’ things.”

And living with a mom enduring kidney failure has opened their eyes to what could be.

“They know it could get to the point where, if I don’t get a kidney, people die waiting for kidneys,” she said.

To pass the time, she listens to music or watches TV. She tries not to watch the clock on the dialysis machine, the pie-shaped indicator that could drive you crazy if you let it.

The only thing worse than waiting in the chair is waiting for a kidney.

The wait for a kidney can be longer or shorter depending on blood type. The shortest waits come to people with blood type AB. Blood type B is the longest wait and blood type O is the second longest.

The most important thing, Qureshi said, is spreading the word.

“People have a lot of pride when it comes to these kind of things,” he said. “They do not want to ask, and I think it is very important that we give people the opportunity to help.”

MCHS has dialysis units in Fairmont (24 chairs), New Ulm (24 chairs) and Mankato (70 chairs).

As Qureshi says, most people who need a kidney won’t get one.

“Kidney failure is a very poor diagnosis,” he said. “For someone who is old, it’s sometimes worse than getting a diagnosis of colon cancer.”

For those patients, the end usually comes with medical professionals keeping a patient comfortable until they die. Death by kidney failure is a quiet one. Patients get very tired and die in their sleep.

http://mankatofreepress.com/health/x1303538240/Woman-in-need-of-kidney-transplant-spreading-the-word-about-organ-donation