Restaurant owner’s hopes of getting a kidney from a loyal customer were dashed. What’s next?

Restaurant owner’s hopes of getting a kidney from a loyal customer were dashed. What’s next?
Fran Scibelli, photographed last week at Fran’s Filing Station, endures dialysis treatments three times a week, for 2 hours and 45 minutes each time. She says she feels “fine now, but I don’t want to wait until it becomes a crisis. Because even though I feel great, and that’s great, my health is not as good as I feel.” (Source: The Charlotte Observer)

CHARLOTTE, NC (The Charlotte Observer) - The short version of Fran Scibelli’s story, to this point, is pretty simple: She needs a kidney transplant, and she’s now putting it out there publicly in the hopes that a random stranger will be moved to at least consider submitting to the process of seeing whether they’re a match.

But the longer version? It’s equally heart-warming and heart-breaking for her to tell.

Scibelli, 57 — who owns a well-known restaurant in Dilworth that emphasizes a neighborhood feel and her personal connection with her customers — is faced with irreversible kidney disease that promises a gradual deterioration of her health and a lifetime of dialysis appointments, unless she is lucky enough to find someone who will give her a new organ.

Carrie Baldwin, 56 — who lives around the corner with her wife Megan Guhl and has been a regular at Fran’s Filling Station since it opened in 2009 — has grown so fond of Scibelli and the eatery over the years that when she first learned of Scibelli’s need, she immediately expressed interest in being the donor.

That was last June. And while others who’ve expressed interest haven’t followed through, Baldwin did, spending all summer and much of the fall jumping through the requisite hoops (multiple physician visits, appropriate testing, various types of counseling) that would determine whether she was a match. By the time November rolled around, she’d cleared them all.

It looked like Scibelli — who’d been living with her disease for nearly two years and enduring dialysis for almost a year and a half — was going to get her storybook ending.Or, more accurately, her storybook new beginning.

“I mean, I don’t know what to say,” Scibelli told her. “‘THANK YOU, and you have a gift card forever.”

But right before Thanksgiving, during one of the final exams, doctors discovered that Baldwin has a rare heart condition called Long QT syndrome, which often goes undiagnosed. It increases her risk of an irregular heartbeat and can cause sudden death, triggered by things like exercise or, say, the stress of a surgery.

Just like that, Baldwin was told she’d been disqualified.

The two women saw each other the night before the holiday, and Scibelli asked if Baldwin had any updates. Baldwin lied and said she hadn’t. “I kind of felt like that would be a bummer to say, ‘Happy Thanksgiving! Oh, and by the way, I can’t give you a kidney,’” Baldwin says now. She ended up breaking the news to Scibelli the following week, over hugs and tears.

Since then, two others have started the assessment process to see if they could donate to Scibelli: another regular customer at Fran’s Filling Station; and Frank Scibelli, Fran’s younger brother (known locally as leader of a restaurant group that owns Mama Ricotta’s, Paco’s Tacos and Tequila, Yafo Kitchen and Midwood Smokehouse).

Neither got far along before being ruled out.

When she realized her brother wasn’t a possibility, she says, “That was the final feeling of like, well, there’s nobody in my circle that is gonna be able to be a donor. ... I’m on the transplant list, but people wait years.”

According to the National Kidney Foundation, more than 100,000 Americans are on the waiting list for a kidney transplant, and each month, 3,000 new patients are added to it. The fastest way to skip the line is to have someone you know offer to donate a kidney directly to you, at which point that person can initiate the rigorous, in-depth evaluation process that Baldwin went through.

You could also try to get someone you don’t know to offer to donate one directly to you.

For instance, you could design a T-shirt with “In Need Of Kidney / O Positive” and your phone number printed on it, and wear it while walking around Disney World. (A man named Rob Leibowitz did it, and it worked.) Or you could write a letter to the President of the United States asking for help finding a kidney. (An 8-year-old boy named Fore Putnam did it, and it worked.)

Scibelli had read both of these stories. And finally, this winter, she came to a point where she thought, “Why not try to get some attention?”

“It occurred to me that if I have a small following in Charlotte just because I’ve been in the food business for many years — that if I have an opportunity to use that — I do want to put it out there in the universe that I need a kidney,” says Scibelli, whose blood type, we should point out (since she hasn’t had a T-shirt made), is B-positive. “Because if I don’t, nothing’s gonna happen.”

“I just hope my story touches a few people enough to want to be tested to see if they’re a match.”

And even if you’re not a match for Scibelli, one of her doctors says, you can still help her skip the wait list — while helping another person in need of a kidney transplant do the same.

George Hart of Metrolina Nephrology explains that if an approved donor is not a match for their intended recipient, there’s a possibility that a “swap” can be arranged with a donor-recipient in a similar situation, if the recipient from one pair is compatible with the donor from the other (and vice-versa).

The transplants take place at the same time, and it’s something that still couldn’t have happened if not for the donor’s desire to give to their intended recipient.

“I mean, there’s definitely an emotional component to this, too,” Hart says. “It’s a very loving gesture, and it brings people closer together.”

It brought Fran Scibelli and Carrie Baldwin closer together, both women say, even though it didn’t end with Baldwin being able to give Scibelli a piece of her.

In fact, more than three months later, Baldwin still gets emotional when she talks about it.

“Well, I’m just still just — I — just still — I — I hate it,” Baldwin says, her voice breaking, as she struggles to explain the disappointment she felt over not being able to help Scibelli.

“When I saw her the night before Thanksgiving, she told me, ‘My mom said that this is just gonna be the best year. It will be 10 years of having the restaurant, and hopefully I’ll get a new kidney.’ So I got really, really sad. You can tell I’m still sad. ... But I’ve changed my attitude. I said, ‘If I can’t give her a kidney, then I’ll help her find one.’”

Scibelli’s story, she believes, is still going to get its happy ending.

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