Fight against PKD is a family affair

Wednesday, January 23, 2008 9:24 PM US/Western

Fight against PKD is a family affair in the Upper County

By MARY SWIFT
staff writer

CLE ELUM — Veronica Soderstrom laughs when she reminds her sister, Celeste Mills, to take care of herself.

After all, Soderstrom will tell her, “You’re my kidney’s caretaker.”

Call that a bit of black humor among two Cle Elum sisters who know that what they’re laughing about is no joking matter.

Soderstrom has polycystic kidney disease (PDK), an inherited disease that causes fluid-filled cysts to grow on the kidneys. The disease, no respecter of age, race or sex, causes symptoms that range from high blood pressure to pain in the back, stomach or side and frequent urinary tract infections among other issues. Over time, it leads to kidney failure in half of the people who have it. Because there’s no cure, when that happens the only recourse is dialysis or kidney transplant.

Parents with the disease, one of the most common life-threatening genetic disorders, have a 50-50 chance of passing it on to their children.

Call it a family affair.

Soderstrom’s grandmother had it and died in her 50s of complications from the disease.

Her mother, Cle Elum’s Barbara Cook, who had a kidney transplant in December 2006, has it.

So do three of Soderstrom’s five siblings.

So does the youngest of her two children, 11-year-old Krystyne, a sixth-grader at Cle Elum-Roslyn Elementary School.

A good student and avid athlete, she plays basketball and softball and dreams of a career as a veterinarian.

“It’s terrible because your back hurts,” says Krystyne, one of seven children currently involved in a special drug study out of Denver. “Exercise helps.”

Soderstrom says the hope is that the drug “will slow the progression of cyst growth and eventually provide a treatment for patients with PKD. Right now, you just wait until you hit dialysis — or a transplant. You live with a lot of pain.”

Not that Soderstrom, who is 37 and has an active lifestyle, is the type who waits. Nor is she one who wastes time on self-pity.

Five years ago, she learned about the Seattle Chapter of the PKD Foundation, an international organization working to find a cure for the disease.

She signed on to help the organization — and others facing the same battle she does.

“We have meetings every month,” says Soderstrom, now the chapter coordinator. “I get calls and e-mails from people who are newly-diagnosed or people who want information.”

Each September the organization holds fundraising walks at locations across the nation.

Mills, who will travel to Nashville, Tenn., soon for training, is the event coordinator for the Seattle walk this year. She and Soderstrom will have plenty of family company.

Among them: their parents.

Barbara Cook, who was on dialysis for 2 1/2 years until a transplanted kidney from an unknown donor in Chicago freed her, wouldn’t miss it.

“I was on peritoneal dialysis,” she says. “You have a catheter in your abdomen. Four times a day you take out what’s in your peritoneal cavity and replace it with dialysis fluid. It basically acts as your kidneys would.” It’s a procedure different from the more commonly known one in which a patient’s blood is circulated through a machine for cleansing.

She remembers the day the call came saying a match had been found for her transplant.

“I sat there with the phone in my hand and didn’t say a word,” she says. “I was stunned. I was told it was a ‘six-point’ match. The transplant coordinator said the only way it could have been better is if we had been identical twins.”

Without a cure for PKD, she knows that other family members — including Krystyne — may also eventually have to have transplants.

“She’s a little go-getter,” Cook says. “She’s small, but when she gets out there on the basketball court she gives no quarter.

“I’m just hoping she’s the only one of our nine grandchildren who comes up with this.”

http://www.kvnews.com/articles/2008/01/26/news/doc4797ae829f2ac418606380.txt