Jamestown girl looks forward to transplant

Into hour three of her dialysis Wednesday, 16-year-old Emily Gunderson yawned as the machine cleaned her blood and returned it to her body. She’s looking forward to January and a kidney transplant to end the thrice-weekly dialysis at Jamestown Hospital.

Emily apologized for yawning, but the three hours of dialysis, which cleans her blood of toxins and wastes, makes her tired. Despite more than two years of dealing with her kidney disease and all its ramifications, she remains happy and upbeat.

“I look and feel fine most of the time,” she said. “But when my friends ask if I want to hang out, I just can’t make any promises. I don’t know if I’ll be able to keep them.”

She never knows when she’ll feel tired and sick. And because most of the time she doesn’t look sick, it’s hard for others to realize it. And Emily herself refuses to let it get her down.

“I was never a grump before, so why change?” she said. “But people think it’s funny that I’m smiling and laughing.”

Emily has been diagnosed with a condition called Focal Segmental Glomerulosclerosis, or FSGS for short, although it took awhile to discover that. The problem started in summer 2006, just before her freshman year at Jamestown High School, with sudden fluid retention in her legs, face and eyelids. The doctor thought it might be allergies. From there it’s been a long trip through two years of treatment with different medications and therapies for kidney disease, finally reaching the need for a transplant.

The worst part of the whole disease process for Emily was the weight gain, she said. It was the only time she got depressed. For a month, she lived on Jell-O and crackers or didn’t eat at all, as the fluid filled every part of her body.

“I went to the University of Minnesota hospital,” she said. “They took off 20 pounds of fluid and I came back half my size.”

And still there was no evidence of damage to her kidneys. Doctors hoped to treat the disease with medication, but a biopsy earlier this year ended that hope. The kidneys were damaged, there was scarring and FSGS was diagnosed. A kidney transplant was necessary.

“The drugs were hard on her and the kidneys were shutting down,” said her father, Troy Gunderson. “There was nothing more they could do.”

Troy is donating a kidney to his daughter. He said his blood type and tissue were compatible.

“Sheri (his wife) said she had the kids, it was up to me to fix them,” Troy said, with a laugh.

Besides Emily, the Gundersons have another daughter and two sons. They live in Jamestown.

Sheri Gunderson is a nurse, which made the situation difficult for her. She knew what the possibilities were and thought at first to keep it all to herself. But, she said, that just couldn’t work.

“We’ve learned to talk openly with the whole family,” she said. “We don’t try to hide things.”

It shows. Emily knows just as much about her FSGS, her transplant and the experimental nature of her surgery as her parents. She also knows that although she’s an excellent candidate for a transplant, there are no guarantees.

“Her condition can come back in the new kidney, so it’s a risk,” Sheri said.

To prevent that from happening, more will be done with drugs and new protocols before and after the transplant, which is being done at Mayo Clinic. Emily’s blood must be rid of the immune factors that can cause rejection or a recurrence of the scarring.

“It’s a little like putting your blood into a cotton candy machine,” Emily said of the process.

She’ll be in Rochester, Minn., for about six weeks, which is longer than most transplant patients. She’s glad the surgery was moved from December to early January so the family can be together for Christmas.

Emily is being home schooled and is also taking JHS classes as a homebound student. She figures she’ll have plenty of time during recuperation to study. Despite more than two years of dealing with FSGS she’s maintained an A-B average.

“I decided not to go to school this year, but I can still go and see my teachers and friends,” she said. “I still want to graduate with my class.”

It will be six months after the transplant before she can go to the school or hang out with her friends because her immune system won’t be functional. But Emily believes it will all be worth it.

“I’m more excited than worried or scared,” she said. “It’s nice to know I won’t be sick.”

“She doesn’t know what it feels like to feel normal,” Sheri said.

An account has been opened at Gates City Bank called the Emily Gunderson Benefit to help the family cope with the expenses. A benefit spaghetti supper is also planned to help defray the costs.

“We feel incredibly blessed with the outpouring of support,” Troy said.

Sun reporter Toni Pirkl can be reached at (701) 952-8453 or by e-mail at tonip@jamestownsun.com

Tags: emily gunderson, jamestown, gunderson, dialysis, transplant, kidney