Eagan woman life's on hold during wait for kidney

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EAGAN, Minn. (AP) — Ellen Rorman is both a pageant queen and a dialysis patient. She wears her scars as proudly as she wears her tiaras and sashes.

"My scars are my badges of honor," says Rorman, 22, of Eagan. "They tell my story -- where I've been and where I'm going and that I need a transplant. When people see my left arm scarred from dialysis, they want to know what happened. It gives me a chance to speak about living organ donation. My scars show I'm a survivor -- that, although life is very difficult, I will not stop looking for a donor."

It has been a year of highs and lows for this survivor.

The high: As Miss Eagan International 2014, Rorman went on to the Miss Minnesota International competition in March, where she was named first runner up (People's Choice).

The low: Rorman's struggle with kidney disease has become a life-or-death situation -- again.

Rorman was 12 months old when her parents began noticing that she was always thirsty, rarely hungry and extremely sensitive to light. She was 18 months old when a diagnosis was made: cystanosis, a rare and incurable metabolic disease that is particularly hard on the kidneys.

"They knew at some point I was going to need a transplant," Rorman says, "but I was put on a medicine called Cystemine. I was on that treatment for almost 18 years."

The medication had to be taken every six hours, but it helped give Rorman an ordinary childhood. In high school, she was a cheerleader.

Then, things changed.

"At age 17, the doctors realized my creatinine level -- which measures kidney function -- was five. It's supposed to be less than one. The higher it is, the worse it is for the kidneys. Five is very high."

Rorman needed a kidney transplant.

"I ended up having my aunt be a match," Rorman says. "I had the transplant on June 24, 2010, the summer before college."

After recuperating from surgery and adjusting to the anti-rejection medications, Rorman started at Minnesota State (Mankato) that August, the St. Paul Pioneer Press (http://bit.ly/1xy0QGC ) reported.

"For the first couple of months, it was great," she says. "Then, I started to get sick. I spent some time in the hospital with an infection. I began to realize that, even though Mankato was not too far away, it was difficult to be away from my parents and the hospital. So, I transferred to the U of M. I liked it a lot. It was great the hospital was right on campus. I could walk there if I had a question."

Rorman was a regular college student, living with friends and studying to be a nurse. She wants to earn a master's degree and specialize in the transplant field.

"Things were great for a long time," Rorman says.

Then, they weren't.

"Two days after my 21st birthday, in April 2013, my blood work was done and they told me I had to start dialysis because I had rejected completely," Rorman says.

"We had known it was coming -- my numbers were creeping up again -- and we had fought it. The month before, I had had to take a drug that is used during cancer treatment, to wipe out my immune system to prevent rejection, but it didn't work.

"It was pretty devastating."

For her aunt, too.

"She was sad but knew nothing could have prevented this," Rorman says.

For now, Rorman has had to take a break from school and move home with her parents as her condition worsens. Her life is scheduled around dialysis, which saves her life, three nights a week, four hours at a time. She has had complications from dialysis, including blood clots and infections, which have meant a series of hospitalizations, catheters and surgeries.

Rorman says she is now back on the kidney transplant waiting list. This is no guarantee that she will receive one.

Every day, 13 people die waiting for a kidney, according to the National Kidney Foundation: "Many people who need transplants of organs and tissues cannot get them because of a shortage of donations. Of the 118,000 Americans currently on the waiting list for a lifesaving organ transplant, more than 96,000 need a kidney, but fewer than 17,000 people receive one each year."

Because of these odds, Rorman's parents, Fran and Troy Rorman, are asking people to contact the University of Minnesota Solid Organ Transplant clinic to schedule an initial evaluation to be a living kidney donor -- if not for their daughter for someone else.

"Please consider living donation," Fran Rorman said in a recent plea to friends and family on Facebook. "We want so badly for Ellen to live a life of happiness. No more hospitals, no more dialysis, no more sadness, no more waiting."

Rorman says her doctors remain optimistic. She tries to be.

"I'm the youngest person at dialysis by far," Rorman says. "I know I'm fortunate, because things like this don't exist for other organs. And yet, dialysis is not a way of life. It's really not. I'm living but I'm not living, you know?

"I should be a senior in college, living my life. There are all these things I want to be doing. Instead, my life is completely on hold, and I'm back at home.

"My days consist of lying on the couch, getting up to go to the bathroom -- well, not usually. I can't eliminate, that's why I go to dialysis three nights a week. If I'm lucky, on a good day, I might sit at the kitchen table and use the computer. But really, most of the day, I'm on the couch, too exhausted and sick to do anything."

She and her family are focusing again on finding a living kidney donor -- but this time, due in part to antibodies in her blood, her family is not a match. Rorman says that if she does find the right match, she still has a chance of living a full life.

"I don't know if I'm going to make it, I really don't," Rorman says. "But I do know that a transplant is my only hope."


Information from: St. Paul Pioneer Press, http://www.twincities.com

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MOLLY GUTHREY. Paul Pioneer Press


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