Ex-surfer needs another kidney, but hospital first requires $1,000

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January 26, 2008

'It's part of life' for Jessica Harder

Ex-surfer needs another kidney, but hospital first requires $1,000

BY HILLARD GROSSMAN
FLORIDA TODAY

If laughter, as they say, is the best medicine, then Jessica Harder should be all cured by now.

But giggles and grins, unfortunately, can't replace hearts and kidneys -- two of a myriad of physical woes for the 20-year-old former surfer, who eight years ago was the poster child for the National Kidney Foundation surfing contest in Cocoa Beach.

"I still feel like a normal person," she says, checking her cell-phone text messages. "People look at me sometimes because I have a handicapped sticker in the window, but I could tell them stories . . .

She could start with two open-heart surgeries before she turned 3, one kidney transplant at age 12, four strokes -- two of which had paralyzing effects she's still overcoming -- and, oh, how about life-threatening viral encephalitis, liver disease and end-stage renal disease?

"She's been beat up . . . by one of those big bats, too," said Rockledge's Rich Salick, the state's director of community relations for the National Kidney Foundation. "But I've never seen anyone as motivated as her. She's always laughing and smiling, and that's great to see."

Harder's transplanted kidney -- the one she received from an 18-year-old cadaver -- has shrunk ("Doctors can't even find it," she says) and hasn't functioned since October of 2006. She currently requires dialysis -- filtering of the blood -- three times a week, three hours per session.

"I haven't peed in eight months," she says, smiling. "But nine hours a week, to keep living, that's fine."

Now, getting back on the kidney transplant list has been her worst nightmare.

Falling in a web of paperwork and loopholes between Medicare and Medicaid, Harder recently received a letter from the Florida Hospital Transplant Center in Orlando, saying they could not re-evaluate her to put her on the organ donor recipient list because she does not have at least $1,000 in savings.

"That's just to show I can pay for prescriptions, if I need them," says Harder, who estimates she will need between $1,500 and $5,000 to cover non-insured expenses.

The way Harder explains it, Medicare would normally pay 80 percent of her bills, and "medically needed" Medicaid would cover the other 20 percent -- although there is a $733 deductible each month before Medicaid kicks in.

That's why Harder was forced to cut back on the dosage of her immunosuppressants last year, possibly leading to the rejection -- or failure -- of her kidney.

"No one knows for sure what caused the rejection, whether it was the lack of medicine or if it was just time," she says. "It lasted about seven years, which is great, considering. But I blame myself for that."

"I just wish she would have told me," Salick said. "Maybe we could have done something for her."

Medicaid actually covers kidney transplants, and Medicare helps out up to 36 months after the transplant. If she's on dialysis -- which she is now, because she has no kidney function -- Medicare will cover that, too.

Tough life -- so far

Harder, 2 pounds at birth, was immediately struck with heart problems, given up for adoption, and shuffled through 89 foster homes before nurse Debra Thorpe, a former surfer from Fort Lauderdale, and her husband, Dennis (who died of colon cancer when Harder was 6) came to her rescue.

Harder, whose kidney problems were discovered at age 7, was in a program called "adopted Medicaid" until she was 18. She and her mom won a challenge to have a six-month extension of that insurance while her adult Medicaid paperwork was being processed.

"But they said I was too healthy to qualify, because I already had gotten the kidney," Harder says. "To get back on Medicaid, I basically would have to get real sick again, or to somehow work long enough to earn Medicaid benefits, and that wasn't going to happen."

Salick and the NKF have been lobbying Congress, so transplant patients can be fully covered on a life-long basis.

The former surfer and surfboard maker (Salick surfboards) has survived through three kidney transplants, the first in 1974.

"Not bad for borrowed time, huh?" he said. "Thirty-five years ago, who knew I'd still be here?"

He estimates there are 100,000 people awaiting kidney donations across America, some 9,000 to 10,000 just in Florida.

"Jessica is such a brilliant kid, and she was so productive," Salick said. "I mean, here's a girl who graduated from high school at age 15, and nearly completed her junior college degree a year later. I know all this business of her kidney rejection has gotten her down, but I never hear a complaint from her. To get back on that list, she just says, 'I'm going to raise that money myself.' "

Harder, an admitted video-game addict, has joined a couple of close friends in forming a Halo 3 video-game contest in March, where entry fees will go toward donations to her cause. She's excited about the idea, although slightly embarrassed, too.

"I really want to work," she says. "I know it must sound crazy coming from a young person, but I've always wanted to work. I'm just not sure if anyone is willing to hire me for a part-time job where I can sit most of the time."

Her last job was at age 151/2, working as a lifeguard at the Palm Bay Aquatics Center.

Just lucky to be alive

These days, Harder considers herself "lucky" in a lot of ways, despite her dramatic, made-for-TV-movie kind of life.

She has the support of her mom (who now is attending graduate school in Miami to be a psychologist), her brother and two sisters. Lately, she's been relying on her girlfriend and a roommate, Melissa White.

"We call her 'Mouse,' " Harder says, giggling.

White, 30, her friend of 21/2 years, actually re-enlisted in the Army Reserves to help pay for some of Harder's expenses. She is now stationed at Camp Falluja in Iraq with a civilian contracting company.

"I'm very lucky to have the people I do have in my life around me," Harder says. " 'Mouse' is a wonderful person. She's helped me get along, given me a place to stay and has a car for me to drive, so I can get to dialysis and back. Without them, I'd highly doubt if I could have gotten this far."

Wearing a Roxy T-shirt earlier this week, she stood on the beach looking out at several surfers catching some late-afternoon waves just north of the Indialantic boardwalk. She, no doubt, was recalling the days when she surfed in the NKF contest at age 11 -- while on dialysis, with a catheter, and persevering even after another contestant's surfboard sliced into her right shin bone -- and finished fifth in the women's division.

"I loved it," she says. "All the guys were really fun. I would love to be back out there, if I got my balance back."

She no longer has her surfboards -- doesn't even know what happened to them -- but St. Augustine surfer Greg Taylor has volunteered to make her a couple of new boards and re-teach her how to surf, when she's ready.

"I miss the water, the beach and, most of all, I really miss swimming," she says.

Sounds like a normal kid, but one who also had to swallow 36 pills a day after her transplant. Today, she takes none.

"I guess I'm used to all the needles and stuff," she says. "It's really hard, though, when you feel crappy. Like when you come home and want to clean the house, but you can't because you hurt so much. And when other people say you look yellow.

"The first time I had a transplant, I didn't even think about it. My mom has some papers showing where I talked about not wanting to die. But, in a way, it's kind of funny, because I know it's part of life."

Maybe one day, Jessica Harder can laugh until it hurts.

Contact Grossman at 242-3676 or hgrossma16@yahoo.com

http://www.floridatoday.com/apps/pbcs.dll/article?AID=/20080126/SPORTS/801260321