'There is an angel out there'
BEMIDJI -- At any moment the phone may ring and Paulette Liedl will have six hours to get to Rochester and begin prepping for surgery.
Paulette is one of about 80,000 people throughout the U.S. awaiting a new kidney.
"I am hoping there is a donor out there somewhere who is interested in kidney donation and hopefully they will be a match," she said.
Paulette inherited a genetic condition, polycystic kidney disease, that results in clusters of noncancerous cysts that develop within the kidneys. Complications of the disorder include high blood pressure and kidney failure.
Her father, who died at age 71 in 2004, also had the disease. He underwent two kidney transplants, the last of which took place just months before he died.
"She's now entering the age where her dad had the kidney shutdowns," said Greg Lield, Paulette's husband of 33 years. "When her dad had his kidney removed, they had cysts growing on them, all over. Each kidney weighed over eight pounds a piece."
Paulette said the disorder results in enlarged stomachs as the kidneys grow and push outward, often causing pain or difficulty breathing.
"They're pushing up on the lungs and under your ribs, pushing on everything," she said.
Herself, she has never experienced a breakage of the cysts, but a sister has. Of Paulette and her five siblings, three have the disorder.
Paulette found out she had the disease shortly after the birth of her daughter, her second child.
"I had pre-eclampsia with my son and then the second pregnancy was normal," she said. "After I gave birth to her, my blood pressure started going up. So I went to the doctor and had it tested and we decided to do an ultrasound and of course, at that time, I had cysts already forming."
She has seen several nephrologists -- physicians that specialize in kidney care -- and has been seeing her current doctor for the better part of a decade.
This past fall, as her kidney function dipped below 20 percent, Paulette's nephrologist referred her to the Mayo Clinic to begin preparing for a potential transplant.
Paulette and Greg spent a week in Rochester as she underwent a barrage of tests. The first day, she gave 20 vials of blood.
The Mayo screens patients not just for health but also for worthiness, asking each potential organ recipient why she should receive such a precious gift.
"I want to make sure I get to see my granddaughter, who is age 8, graduate from high school," Paulette said.
Their daughter, who lives locally, got married two years ago and does not have children. Their son has three children, aged 8 to 3, and they live in British Columbia.
"I want to see the children grow up," Paulette said. "I guess if I had a lifelong goal, I'd like to see her (the oldest grandchild) get married."
One of the first things the Mayo did was order everyone to take out their cellphones, identify their loudest ringtones, and set those tones as the default ring for the Mayo's phone number.
Because when the Mayo calls to say they've found your match, you have exactly one hour to respond before they move on to the next recipient.
For the Liedls, the primary phone number is actually Greg's cell; second is his pager. Greg is the transportation coordinator for Bemidji Area Schools.
"My phone is on my belt 24 hours a day," Greg said. "The second (number) is my pager, from (Beryl) Wernberg at the Law Enforcement Center, which is on my hip 24 hours a day. Both are always at my bedside, neither one ever leaves me."
What happens if they go to a show or movie?
"I'll put it on silent," Greg said. "But I'd hang on to the danged thing, so if it buzzed I'm right there to answer."
From the time the Mayo calls, the Liedls will have six hours to get to Rochester.
"We used to drive around on empty (gas) tanks," Paulette said. "Now, the tank is always filled."
The gift of life
Liedl is on the Mayo's list for a deceased person's kidney, for one that comes available that matches her specifics. The average wait is five years, they told her, but the call could come at any time.
Paulette also is seeking individuals who may be interested in exploring living donation as well.
The Mayo offers a program through which kidney donors can directly help their acquaintances. Say, for example, that a friend was willing and eager to give Paulette a kidney but their blood types didn't match. Meanwhile there is a second pair of friends, a potential recipient and a friend of his own, whose blood types don't match one another.
Through "paired donation" Paulette's friend could give a kidney to the second recipient, and his friend could give his kidney to Paulette.
So even though their friends' organs don't exactly benefit their specific friend, their kidney donation benefits them.
"So all four can come together," Greg said.
Himself, Greg said he gladly would step forward but is unable to do so.
"I am insulin-dependent diabetic and I'm ineligible," Greg said. "Otherwise I'd be the first one to say, 'I'll give her a kidney,' but I can't."
They have faith the day will come.
"I am excited," Paulette said. "I am hoping that one day, God help me, it will be the time and it will be my turn."
She is hopeful she can undergo a transplant before she has to go on dialysis but that will be determined by her kidney function.
In the meantime, she and Greg are focused on what they can control.
In November, as they went to the Mayo, Paulette and Greg were instructed very specifically on how to manage their diets.
"We met with this nutritionist who said, 'You see this? This is your sodium, gone. This is your phosphates, gone,'" Greg said. "'This is your new diet: 1,500 calories. Pull it out of the ground, wash it off and eat it. That's your new diet."
Having just undergone a colonoscopy and having her body cleaned out, the couple immediately embraced their new lifestyle, went home and cleaned out their pantry and cupboards. First, they donated 189 pounds of food to the food shelf, and then another 100 more pounds during a second round.
Already, Paulette has lost 20 pounds.
"I'm feeling really good," she said. "I feel better now that've changed my lifestyle. I feel a 100 percent better. I have really taken a turn with the weight loss and that was one of the things they wanted me to do, lose a few pounds."
She is doing everything she can and is hoping someone, somewhere, will do what they can.
"There's got to be someone out there who wants to donate and doesn't know how to do it, or the process to do it," Paulette said. "There is an angel out there."