The Herald, Sharon, Pa.

June 19, 2013

Rare disease causing kidney failure

By Sandy Scarmack
Herald Staff Writer

WEST SALEM TOWNSHIP — With no idea what happened, 20-year-old Josh Weidner of Pymatuning Township has found himself going to dialysis three times a week, instead of the college class he planned, and is about a year into an 18-month or longer wait for a life-saving kidney transplant.

Weidner woke up one morning in May 2011 with both legs swollen. A trip first to his family doctor and then to UPMC Children’s Hospital in Pittsburgh left him with the news that his kidneys were rapidly failing.

“They don’t know why. There wasn’t any family history or anything like that,” Weidner said.

Diagnosed with focal segmental glomerulosclerosis or FSGS, Weidner quickly started on a regimen of pills aimed at forcing his kidneys to do a better job of filtering out toxins in his blood that were building up.

Because his kidneys weren’t filtering properly, the normally trim 155-pound athlete ballooned to nearly twice his size, carrying almost 160 pounds of extra fluid.

“He was just huge. You know how you get stretch marks when your skin stretches? Well Josh was literally dripping from every stretch mark,” said his mother, Tammy VanSickle.

As a result of the extra fluid, Weidner developed hard-to-control high blood pressure and even had a lung collapse, requiring him to be on a ventilator for a couple days.

While he waits for a kidney to be available, he spends every Monday, Wednesday and Friday at Dialysis Clinic Inc. in Sharon. He has to be there at 6 a.m., for about three hours of treatment where his blood is filtered externally and reinfused.

Afterwards, Weidner said, he’s pretty much wiped out. But he is quick to say he isn’t ill all the time. “I feel OK. I mean I’m still not normal, with the high blood pressure and all, but a lot of the time I feel OK.”

“He’s real humble about all this. He doesn’t really like any attention focused on it,” VanSickle said.

Weidner had just graduated from Reynolds High School in 2010 when his health failed. He was enrolled in Pittsburgh Technical Institute, aiming at a career in graphic design. He had gone to school for three days when he became ill again and ended up in the hospital for nearly a month.

“I had to drop out, sort of take a medical leave of absence, because I was too sick to continue,” he said.

The family has started fundraisers, anticipating the costs they will have to bear when and if a kidney becomes available. The family has insurance that will cover most of the $250,000 cost for a transplant, but not enough for the associated expenses, said VanSickle, a nurse’s aide at White-Cliff Nursing Home in Hempfield Township.

They have been selling candy bars and on Tuesday, received a $500 check from TMK IPSCO in Brookfield, where employees organized a fundraiser to help Weidner. The company is continuing its efforts with a pepperoni roll sale later this month, said Pamela C. Kist, an administrative assistant.

VanSickle said the family plans to host a spaghetti dinner sometime in August.

“I just really appreciate all that, that they would do that,” Weidner said.

Any money that is raised will go toward the family’s housing expenses, food, gas and lost wages, his mother said.

Once he has the transplant, the chances of the disease recurring are significant, she said, and consequently, Weidner must stay in Pittsburgh and be at the hospital about six hours a day, for up to a month. He will be tested over and over again for signs of the new kidney failing, VanSickle said.

The money raised from fundraising will go to help with housing expenses, food, gas and lost wages while Weidner is in Pittsburgh, she said.

He has a Facebook page, JustforJosh, his mother said, as well as a page on the National Foundation for Transplants website. Anyone interested in donating can visit the website, search for Weidner’s name and follow instructions for donating by credit card or check, she said.

Her son’s illness has taken a toll on the family, she said, but overall, she’s grateful for the support system she has, particularly when her son is hospitalized.

VanSickle said she works full-time, midnight turn at the nursing home. “So I would finish work, run home, get my daughter off to school, run down to Pittsburgh to be with Josh, run home in time to be with my daughter a little bit, grab a few hours sleep and go back to work,” she said.

“But if I couldn’t make it, someone was always with him,” she said.

And as far as Weidner’s future plans, he said he’s changed his mind about a career in graphic design.

“I want to go to school to be a nurse. I want to work in dialysis. I’ve been there enough to know about it,” he said.