Rare illness leads to painful loss, but also strength and love

Rare illness leads to painful loss, but also strength and love
As a result of her disease Erin Kistner lost her baby girl

* By Mary Maraghy
* Story updated at 5:46 PM on Friday, Dec. 5, 2008

Erin Kistner figured her blood pressure spiked because she hadn't exercised enough since graduating from Orange Park High School in 1997.

But last year, the 29-year-old learned she had focal segmental glomerulosclerosis, a rare illness that attacks the main filtering part of the kidney and leads to kidney failure. She'd need a kidney transplant to survive.

The diagnosis came during Kistner's first and long-awaited pregnancy. As a result of her disease, Kistner's 1-pound baby girl, Amelia Grace, was stillborn at 20 weeks.

"I had no idea I was sick. I could have continued on, not knowing," said Kistner, who said Amelia saved her life and taught her how to live it. "Life is short, so make it matter. My husband and I don't sweat the small stuff anymore. She brought all that to us."

Kistner said she and her husband, Rick, who both come from large families, had paid off their debts and bought and renovated a home they hope to fill with children.

In July, Kistner qualified for the organ donor list after a week of tests and informational classes at the Mayo Clinic in Jacksonville. During classes, she learned she'll need to take costly post-transplant anti-rejection drugs throughout her life. As a transplant recipient, she would qualify for Medicare, which covers the drugs for 36 months.

"After that you better have a plan," said Kistner. "We still have a long road ahead of us - finding a donor, surgery and recovery, and finding a way to pay for the entire process. Although it's been a pretty tumultuous first year of marriage, we have an incredible love and strength we never knew we had. But we dream of one day having a family and of growing old together."

Kistner's best friend's sister, Layla Smith, organized a fundraiser for Tuesday to help the Kistners with medical bills.

"She came to me out of the blue wanting to help," Kistner said. "I am so touched that she was willing to use her gifts and talents. There are so many people in the world who care about more than themselves. She's an example."

Smith, who owns a wedding planning business called Wed With Ease, calls Kistner an amazing lady with an overwhelmingly positive outlook that speaks volumes about her faith and strength.

"It's uplifting to be in her presence, knowing what she has gone through and still has to go through. She is thankful because the loss of her daughter enabled her doctors to diagnose her condition," Smith said.

"The circumstances surrounding her diagnosis were tragic, there's no denying that, yet Erin is looking forward to a life filled with love, joy, happiness, and yes, hopefully in her future, children."

http://www.jacksonville.com/community/my_clay_sun/2008-12-06/rare_illness_leads_to_painful_loss_but_also_strength_and_love