Sisters battling kidney disease together

[okarol]

Sisters battling kidney disease together

Related YouTube Video http://youtu.be/YPjETAjsKBU
 
Posted: Saturday, July 23, 2011 6:00 am | Updated: 6:46 am, Sat Jul 23, 2011.
By Peg Quann Staff writer
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.
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 diagnosis than young Caucasian males.
The NephCure Foundation states that "to date, there is no common effective treatment or cure and there are no FDA-approved drugs to treat FSGS."
Manu Varma, a NephCure board member and medical student, said researchers are looking at several angles to try to better understand nephrotic syndrome disorders, including FSGS. They are studying the roles of genetics and the immune system, as well as looking for clues in the kidneys themselves and in the blood and bone marrow of affected patients.
The Antosh family is trying to get the word out about the illness in hopes of raising funds for more research.
Antosh, a former Philadephia newspaper reporter and freelance editor, is now focusing on his family and the NephCure Foundation.
On Oct. 16, the local NephCure chapter will hold a walk at Cooper River Park in Pennsauken, with registration at 10 a.m.
For the Antoshes, last spring was difficult. Nemeth and her three children traveled from their home in Mooresville, N.C., for the transplant surgery. A petite, young-looking woman for 47, she said she knew that when the time came for McCoog to need a kidney, she would be the family member to match.
"For me, it was personal. I wanted to do it," she said.
She kidded that after her kidney was removed, the doctor told her, " 'It was the most beautiful kidney. ... It was the best kidney I've ever seen.' "
But on the day she was discharged from HUP, Nemeth began running a fever and had trouble keeping food down. A hernia had developed at the surgery site and a portion of her small intestine had become lodged in it, forcing her to return to the hospital for more surgery.
For eight days, she couldn't eat. She is now recovering but needs in-home wound care. Two of her older children have returned home to her husband, Lou, in North Carolina. Her youngest, 12-year old Andrew, was visiting with her husband's sister and family at the shore.
McCoog said the surgery was easier for her because she wasn't having something removed. Doctors fitted her new kidney on her front side where it is not noticeable. She recovered well from the surgery, but it was difficult to come home knowing that because of her delicate health, she couldn't visit her sister back at the hospital.
Then she got the news that the protein problem had returned, although the lab work showed that the kidney was functioning well otherwise.
Now McCoog must go to Penn three days a week for the transfusions since her own protein is being lost in her urine.
Her husband, Matt, is "very supportive," she said, as are her parents, who frequently get up at 5 a.m. to get her in and out of the hospital before it gets busy.
The attractive blonde explained that she has a port in her arm where the transfusions are given. Since she is on blood thinners, it takes about 20 minutes for the bleeding to stop after each transfusion, and she has become anemic.
Her mother said prayers are helping the family through the ordeal.
"Our faith has gotten us through this. There are so many people praying for us," Joanne Antosh said, noting that a British woman told her, " 'You're being prayed for all over the world.' "
After the interview, the family headed to the Shrine of St. John Neumann in Philadelphia for a Mass of Healing.
McCoog said she's hopeful about her new kidney.
"My sister's given me this wonderful gift. We need to keep it," she said.
For more information on FSGS, visit the NephCure website at www.nephcure.org.

http://www.phillyburbs.com/news/local/burlington_county_times_news/sisters-battling-kidney-disease-together/article_a8768537-554a-54fe-ac5b-f8ff8847eab4.html

[MooseMom]

Two thoughts occur to me...

1.  I think I read somewhere that when it comes to sclerotic conditions, it's actually best if a donor kidney does not come from a family member because they are not sure if there is a genetic/hereditary factor involved, and

2.  Why did they wait until this woman was actually on dialysis before doing the surgery?  Her family had known that she had fsgs for over a decade, yet they subjected her to dialysis before she was transplanted?  That seems really odd and terribly unfortunate, not to mention unnecessary.

[okarol]

1. I wondered about that myself.

2. Many nephrologists do not refer patients for a transplant until they are on dialysis. And patients do not realize that they can self-refer by making contact with the transplant team themselves to begin the evaluation. Pre-emptive transplants are not done at all hospitals.

[MooseMom]

re point 2., you'd think that 11 or so years would have been enough time for the family to figure this out.  Of course, articles like this one rarely give the full story.  Still, this would have been the perfect example of when to get a pre-emptive transplant, and I'm surprised that any nephrologist these days wouldn't understand that.

[okarol]

re point 2., you'd think that 11 or so years would have been enough time for the family to figure this out.  Of course, articles like this one rarely give the full story.  Still, this would have been the perfect example of when to get a pre-emptive transplant, and I'm surprised that any nephrologist these days wouldn't understand that.

Jenna's neph at a major hospital in Los Angeles told us a year ago that she could not get wait listed until she begins dialysis. It took some convincing but he knows now. Unfortunately it's been nine months trying to get through the evaluation and nothing, so knowing doesn't ensure doing.