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College student's toughest assignment - finding a new kidney

Writing data quickly onto a page in her three-ring binder, 22-year-old college student Ally Hembd treats this assignment as a matter of life and death.

“I could technically die if I have the chlorine level too high,” Ally explains, her right hand scribbling numbers into a chart as she runs through a long checklist before she can start her treatment for kidney failure. Her left arm is tethered by tubes moving her blood through a pair of dialysis machines stacked next to her heated recliner in what used to be the family living room in their Wheeling home. Doing the work her kidneys no longer can do, the machines remove waste, salt and extra water from her blood and keep her blood pressure, potassium, sodium and bicarbonate at safe levels. A 2-inch-thick user manual lists dozens of error codes and explains what they mean.

Each hemodialysis treatment takes almost five hours, including her methodical preparation but not counting the six hours and 12 minutes it takes to make the solution. Ally undergoes dialysis four days a week - and will for the rest of her life if she can't find an organ donor.

  Technology opens a new avenue for those hoping to find a kidney donor. Lynne and Ron Hembd of Wheeling use this window sticker and their allyneedsakidney@gmail.com email address in the hope of finding a donor for their daughter Ally, 22, who has been on the donation waiting list for more than four years. Mark Welsh/mwelsh@dailyherald.com

“Daughter Needs Kidney. Blood Type O. allyneedsakidney@gmail.com” reads the window stickers on the cars of her parents, Ron and Lynne Hembd.

Ally, who grew up in Arlington Heights, was diagnosed with Stage 4 chronic kidney disease three weeks after her 2014 graduation from Hersey High School, where she was an artist, played tennis and did well academically. As a freshman at Marquette University in Milwaukee studying to be a statistician, she developed anemia and massive bruises, was constantly exhausted, lost 15 pounds, became isolated and wasn't living the college life she'd imagined.

“I would spend my English class calculating the slope of my decline. I'm good at analyzing patterns,” Ally says. She came home to be with her parents. Lynne Hembd, a registered nurse who works full time at Advocate Aurora Medical Care Center in Libertyville, often inserts the 16-gauge needles (about the size of a finishing nail) into two spots on her daughter's arm. “I can't just be a nurse or just be a mom,” Lynne Hembd says, explaining how tough it is to cause her daughter pain. “Sometimes I don't get home until 8 or 8:30, and then we have a long night ahead of us.”

  To create a path for her blood to flow out of her body, be cleansed and return, Ally Hembd, 22, of Wheeling, has had three surgeries on her left arm to create a fistula, the connecting of a blood vessel with an artery to improve the blood flow. Mark Welsh/mwelsh@dailyherald.com

Ally has had four surgeries in her upper arm to fashion a fistula, the connecting of a blood vessel with an artery to improve the flow of blood out of and into her body.

Ron Hembd started and ran a manufacturing company, but the economy went south in 2013, he was in a serious car crash, and the family ended up losing the business. They left their home in Arlington Heights and now rent their house in Wheeling. He says he is grateful to be the caretaker for his daughter, who receives disability benefits and Medicare.

“I feel like I'm 17 because of how much I rely on my parents,” Ally says. “But I also feel like I'm 35 because of all the responsibility. Other people my age couldn't even make a dentist appointment.”

She takes 11 pills a day, and the family laundry room contains boxes of gauze, needles, tubes and bags. “It's like a part-time job,” she says.

“I try really hard to focus on the good parts,” she says, noting that she has a wonderful relationship with her family and is not as sick as some dialysis patients. “I'm still urinating. Yay!” she says with a grin.

When she first came home from college, Ally had a plan. “I'll take the semester off, get a transplant, and go back in the fall,” she remembers thinking.

“You'll get one quick,” her father assured her. “You're so young.”

Instead, she's been on the waiting list for four years, as her kidney function worsened until she ended up at a dialysis clinic where most of her fellow patients were talking about their grandkids.

The waiting list for kidneys has topped 100,000 people and grows every year, and the number of kidneys available for transplant is a tenth of that, says Dr. Joseph Leventhal, director of kidney transplantation at Northwestern Memorial Hospital in Chicago.

“Here in Illinois, the waiting time is in excess of seven years,” Leventhal says, and only half the people who rely on dialysis live past five years, although age and other health issues can be factors. “If it's going to take you seven years to get a kidney, you do the math.”

Ally no longer thinks it might be her transplant team every time her phone rings.

As she graduated from Hersey High School in 2014, Ally Hembd celebrated with her sisters Julie, left, and Theresa, right. Three weeks later, Ally was diagnosed with kidney failure. Courtesy of Hembd family

“It's too painful to keep being so hopeful for so long,” she says. Doctors said neither her parents nor her sisters Theresa, 29, and Juli, 23, are suitable donors. A cousin almost qualified but wasn't quite healthy enough to be a donor, she says.

“We set the bar extremely high in terms of the fitness,” Leventhal says. But he's had living donors in their 60s and 70s, and newer medications can help make the donor and the recipient more compatible.

Ally and her family were trained in November and started doing the dialysis treatments at home. The first time, she and her dad both relaxed a bit when it was finished and didn't pay attention to the strict guidelines for unplugging her from the machines.

“Blood squirted everywhere. It was on my face, on my shirt, on the walls,” Ally says. “It looked like a crime scene.”

At times when her mom can't be there, a home therapy nurse stops by to insert the needles. Her fistula narrows with time, and a needle that doesn't fit perfectly is extremely painful, she says.

  As a freshman at Marquette University, Ally Hembd used her statistician skills to calculate the slope of her decline from kidney failure. Forced to quit full-time college, the 22-year-old Wheeling woman needs to undergo dialysis treatments in her home four days a week. If she can find a kidney donor, her life could return to normal, she says. Mark Welsh/mwelsh@dailyherald.com

Feeling better with dialysis, Ally is taking one class per semester at Harper College and currently doing well in an advanced calculus class.

Potential donors can reach her on Facebook or find out more by emailing allyneedsakidney@gmail.com or visiting nmlivingdonor.org. She says the only benefit of her disease is that she's spending quality time with her parents. Her parents say they are grateful for their time together and admire their daughter's strength and positive attitude. But they all are hoping a living donor comes forward.

“I'm not some 5-year-old little girl on life support in desperate need of a kidney right this second, but I am in need,” Ally says. “I didn't get this far just to get this far.”

To learn more about organ donation

With more than 100,000 people on the national waiting list for kidney transplants, the typical wait time in Illinois for a donated organ is seven years. Ally Hembd of Wheeling endures grueling dialysis treatments as she enters her fourth year on the waiting list. Vikki Morgan of Glen Ellyn regained her old life after her husband turned out to be a perfect match. To find out about becoming a donor, visit

organdonor.gov. To see if you can be a match for Hembd, visit

nmlivingdonor.org.

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