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Last updated: Thu. Apr. 10, 2014 - 02:09 pm EDT

Coping with rare disease

Kidney transplant likely 1st of several during teen’s life

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To help

Upcoming fundraisers for Noel Resor:

April 28: Chick-fil-A fundraiser with a “Star Wars” theme, 5:30 to 7:30 p.m.; 15 percent of in-store sales at Jefferson Pointe location, 1725 Apple Glen Blvd., donated to Children’s Organ Transplant Association in honor of Noel Resor.

May 16: “Bowl for Life,” 6 to 9 p.m., Thunder Bowl, 6700 Lafayette St., $60 for team of six or $75 for lane sponsorship with donation made to COTA.

Ongoing: Coin canister campaign; to pick up canister for your business or workplace, call Nancy Leming at 307-3999. Contributions may be made by check and mailed to Children’s Organ Transplant Association, 2501 W. COTA Drive, Bloomington, IN 47403, with “In Honor of Noel Resor” on the check’s memo line or by credit card at

Noel Resor is a 15-year-old from Fort Wayne who says she embraces nerdiness, likes MTV “Teen Wolf” star Dylan O’Brien (maybe, her mother says, a little too much), and enjoys writing.

A teacher has asked her whether she would write her story as a children’s book for a class project. But so far, she’s demurred. “Maybe someday,” she says.

After all, she says, living her story has been quite enough.

Resor has been living since May with a diagnosis of a rare, chronic kidney disease that her doctors say will soon require a kidney transplant. Her parents, Mark and Elizabeth Resor, say any transplant is likely to be the first of several during her life, because a new organ will only slow the progress of her condition, not cure it.

Noel has focal segmental glomerulosclerosis. The condition means that clusters of small blood vessels that act as filters in her kidneys have become scarred and nonfunctional. It’s in the autoimmune family – diseases in which the body mistakenly starts attacking itself.

Studies have linked FSGS to infection, drugs that damage the kidneys, genetics and other system-wide diseases, including diabetes, sickle-cell anemia and lupus. Noel says her case is considered idiopathic, which means the cause isn’t traceable.

“One of my favorite quotes from my doctor is that ‘idiopathic’ means doctors are idiots and they can’t figure it out,” she says with a giggle.

In the months before her diagnosis, Noel says, she had been feeling tired and achy – so much so that friends at school began teasing her when she became whiney after normal activities, such as going up and down stairs.

But then, just before she was diagnosed, she gained about 40 pounds in a matter of weeks. Her body was retaining fluid, and her blood pressure soared.

She says doctors told her the scarred tubes called glomeruli couldn’t split up proteins for use in the body, so they end up being excreted in urine.

“Cells without protein think they’re starving, and so they end up sucking up water looking for it,” she says.

When local doctors found Noel’s condition was beyond their scope, they sent her to Riley Hospital for Children in Indianapolis, where she had a kidney biopsy and other tests and treatments.

Her parents, who say Noel had always been healthy, say it was a hard time for the family, who traveled more than 2,600 miles back and forth to the facility over several months last year.

“The hard part of this is that this is something serious that is happening to your child. You never think of something bad happening to your child. Your mind just doesn’t think that way,” says Mark Resor, 44, who works in tech support for Fort Wayne Community Schools.

Treatment meant numerous hospitalizations. Noel initially went on steroids in an attempt to stem inflammation in the kidneys and then had infusions of protein in the hope of forcing her condition into remission. But the treatments didn’t work.

Ultimately, doctors decided the only thing to do was to use drugs to shut both her kidneys down and rely on dialysis – mechanical filtering by a machine – to get rid of her body’s toxins.

For the past seven months, she has been on daily peritoneal dialysis – treated at home with a method in which fluid is introduced into the abdominal cavity through a tube and a natural membrane in the body called the peritoneum is used as a filter before the fluid is pumped out.

The dialysis goes on for eight hours while Noel sleeps. While there’s some inconvenience and discomfort, the procedure “allows her to feel better,” says Elizabeth Resor, 44, a billing and data specialist for Easter Seals ARC.

“It really has made our lives more hopeful,” Mark adds. “It’s kind of normal in our household now. It’s the ‘new normal.’ ”

Still, the reality is that a transplant is looming. Right now, Noel is not a candidate, her father says, because she first must be weaned off several medications.

It will be at least six months before she will need to start a serious search for a donor, he says, and a transplant is probably about a year away.

Nonetheless, the Resors have started to prepare for the future, investigating which of two transplant methods has a better chance of long-term success. The best-case scenario is that there will be about a 70 percent chance the new kidney will continue to work long-term.

The family also has contacted the Children’s Organ Transplant Association, a national charity based in Bloomington that helps young potential transplant patients raise needed money for treatment-related expenses.

The family has good health insurance, Mark says. But the Resors also now have a goal of raising $75,000 for a COTA-administered fund, which they or Noel will be able to draw from in upcoming years.

With the help of fellow Avalon Missionary Church members Frances Brooks and Nancy Leming, and Noel’s 21-year-old brother, Nick, the Resors are organizing two upcoming COTA fundraisers and a coin canister campaign in area businesses.

Noel, who is now on a break from attending Wayne New Tech Academy because of her illness, says she has been told she is the only patient from Fort Wayne with her condition, which affects males, blacks and younger children more frequently than teenage white females.

But she has been able to connect via the Internet with a young woman in New York who is in her 20s and has FSGS.

“I like her because she’s very up-front about things, but she’s not down all the time or going on about how sorry she feels for herself,” she says. “She supports a lot of people.”

Noel says her experience so far has strengthened the desire to become a nurse that she has had since fourth grade. She even thinks she might specialize in transplant nursing because of the nurses she met at Riley, who “made everything so much easier and so much better.”

She says she thinks her experiences would give her credibility with other young patients.

“I know because of my personal experience I want to help,” she says.

While not eager to write about herself, Noel, an avid reader, has written a brief version of her story on her page on COTA’s website. She says she’s been amazed at people who have found that page or her page on Facebook and offered to be tested when she needs a match.

“They don’t even know me,” she says. She adds that she feels better now than she did during her first few months after diagnosis.

“I like to think of myself as a positive person,” Noel says. “And I like people around me to be positive.”

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