If you’re a regular at Fernanda’s International Market and Café, chances are you know Bethany Johasky.
It’s tough to define her role at the popular, family-owned business at the southwest corner of Federal Highway and Oakland Park Boulevard because it seems to involve just about everything. She might be ringing up an order, or helping a customer locate a particular hard-to-find-wine; there’s a chance she’ll be back at the lunch counter. But a couple of details are likely wherever she’s found – she’ll be smiling, and she’ll be moving.
Her family has owned Fernanda’s for more than a decade, and she describes the job – being around food and people who want to eat it – as the perfect fit for her personality.
“There’s an 80-year-old Italian lady wanting to feed people in this 35-year-old,” she says.
A high-energy 80-year-old Italian lady.
See Johasky at work and you’ll likely not guess what else is happening. You won’t see the days she’d prefer to just go home and lie down. The days when the pain and stress feel overwhelming. The days when smiling and greeting customers by name doesn’t come naturally, even to an extrovert.
Johasky is one of the small but growing number of Americans who suffers from focal segmental glomerulosclerosis. According to NephCure Kidney International, more than 5,400 people are diagnosed with FSGS every year, a number that’s assumed to be low in part because of the limited number of biopsies performed.
The disease attacks the kidney’s filtering units and can lead to kidney failure. It’s one of the causes of a broader condition called nephrotic syndrome. And it’s the reason that, for the third time in her life, Johasky is looking for a new kidney. The disease is more prevalent in middle-aged and older adults, but it can affect anyone, and it attacks regardless of health or life choices. South Florida’s highest-profile FSGS patient was former Miami Heat center Alonzo Mourning. Johasky contracted FSGS two decades ago, when she was a 15-year-old high school student. A swimmer and all-around active teenager, she didn’t know what was wrong when she started to notice swelling. One day, she swelled up so badly that she couldn’t open her eyes. That began the regular trips to the doctor that have never stopped.
“I was the kid who was terrified of doctors offices,” she says, remembering something that had to be overcome quickly. In the two decades since, she’s been to many doctors and tried many treatments.
“There’s always been something to try,” she says. “And I’m always willing to try something.”
Her main doctor through the years has been Gabriel Valle, founder of the Kidney and Hypertension Group of South Florida. They met several years after she was first diagnosed, when she was still a teenager; she’s been his patient for about half her life.
“There’s a human side,” Dr. Valle says. “I deal with numbers and I deal with facts, but it’s unsettling for a young person to lose control of things.” To help lose the fear, Dr. Valle suggests gaining knowledge. Johasky has been great at this. Over the years she has become an active, knowledgeable participant in her treatment – and that, Dr. Valle says, makes a huge difference.
“Those types of things are very unpredictable, but her resiliency and the way she understood the process are very important to us,” he says.
Johasky is a model of the sort of patient who understands the situation and gives the best chance for a positive outcome.
“I love the way they participate,” he says of patients like this. “They lose the fear because they start to understand. When you’re charged with a chronic illness, the best way to lose the fear is by being educated…That’s an important part of their success. You can set up things so that once you’re a patient, you don’t get any surprises.”
Minimizing surprises may be one thing, but getting rid of stress is another. Particularly when it comes to the world of organ donation.
Johasky received her first new kidney in 2005 from her father. Soon after, her body began to reject it. There’s a genetic component to her illness, and it comes from her father’s side – this, as it turned out, meant his kidney wasn’t a good match. Her second kidney transplant came from her aunt in 2008. For nearly a decade, it worked. Then, just weeks ago, she learned she was going to have to go through the donor process again. Her body was rejecting another kidney.
“I’m still in disbelief,” she says. “I never allowed myself to believe anything different. I know that nothing lasts forever, but I really believed that this was it.”
Now she needs to find another kidney. Other relatives have been checked and decided against for various reasons. But, Dr. Valle says, for Johasky and others in her situation, there’s reason to be more and more optimistic.
“When you look back at the evolution of kidney medicine, transplantation has come a long way,” Dr. Valle says. “We have a better way of assessing whether an organ is compatible or not.”
The available organs themselves have also improved. For many years, only cadaver kidneys were available. Now, with success in raising awareness about the safety of kidney donation and the superiority of kidneys from living donors, donations are growing yearly.
“Years ago there was not that much sophistication,” Dr. Valle says. “Transplant has come a long way. The technology is amazing … we’re going to engineer organs before you know it. [When a new kidney goes in] we can have an expectation of a decade or more. The organ can adapt to you and become your organ.”
Today, there’s a good chance Bethany Johasky will be at Fernanda’s. She’ll be working, and she’ll be smiling. She won’t mention her troubles.
But that kidney – the one that can adapt and become hers – she needs to find it. And she’s not alone.
Photography by Mark Thompson
To keep up with Bethany's progress, like her Facebook page: facebook.com/a-kidney-for-bethany-1357273044381016
If you're interested in donating a kidney to Bethany, please contact firstname.lastname@example.org