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Sisters battling kidney disease together

CINNAMINSON — Sisterly love doesn’t get much stronger than the bond between Joanne Nemeth and Christine McCoog. Although 20 years separate the two in age, they are joined now by a kidney that Nemeth gave her little sister last month, and that now, hopefully, will be able to keep McCoog healthy.

The eldest and youngest daughters of Lou and Joanne Antosh sat in their parents’ Paddock Lane dining room Thursday, talking and sometimes joking about the illness McCoog and her family have been dealing with for 11 years. It’s called focal segmental glomerulosclerosis, or FSGS.

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Researchers are still trying to figure out the cause of this devastating illness, which causes the kidneys to filter the blood abnormally, leading protein to “spill” into the urine rather than remain in the bloodstream. The protein then causes scarring of the kidneys as it exits the body, eventually leading to kidney failure.

“Nobody knows” what causes the disorder, Lou Antosh said. Over time, “the kidneys shut down.”

McCoog, 27, of Palmyra, found out she had the disease at age 16 when “I blew up like a balloon,” she explained.

Since then, her kidneys gradually deteriorated until February, when she went on dialysis. After family testing, it was found that Nemeth was an excellent candidate for giving her a kidney. The two sisters shared matches in six antigen areas, so McCoog’s body would be less likely to reject the new kidney from Nemeth than from another donor.

The sisters underwent surgery June 30 at the Hospital of the University of Pennsylvania in Philadelphia. However, the protein leakage has returned.

Doctors left McCoog’s deteriorating kidneys in her body when adding Nemeth’s because it was too risky to remove them. Researchers are now trying to determine whether the old kidneys are causing the protein to appear in her urine, or whether something in her blood is now attacking the new kidney, causing the protein leakage.

Since the new kidney is still functioning well, they hope the problem will subside as the old kidneys shut down, Antosh said.

In the meantime, McCoog must receive albumin — a type of protein — from blood plasma transfusions three times a week at HUP.

It’s a setback McCoog and her family were hoping to avoid.

“It’s a roll of the dice whether the new kidney will filter the protein,’’ her father explained. “We were concerned about a recurrence.”

Antosh is one of the founders and on the board of NephCure, a Berwyn, Pa.-based foundation that focuses on research on FSGS and other conditions that cause kidney scarring and protein leakage. Collectively, these diseases are called nephrotic syndrome.

“Approximately 1,000 FSGS patients a year receive kidney transplants; however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40 percent of patients,” the NephCure website states.

McCoog is one of those cases.

NephCure statistics about kidney disease and the little-known FSGS condition show that:

In total, 26 million Americans suffer from chronic kidney disease, including tens of thousands with FSGS;

FSGS is the second-leading cause of kidney failure in children;

There are more people nationwide with FSGS than with cystic fibrosis;

As of May, 4,764 FSGS patients were waiting for a kidney transplant. Of those, 857 had already received one transplant that had failed;

Young African-American males are five times more likely to have a diag