Froso Andronikou cried when they told her she’d have to go on dialysis.
“When I first heard the words… I literally had tears coming out of my eyes, which is shocking for me because I had cancer and when the doctor told me I never cried,” said the 53-year-old Cypriot now living in New Jersey.
But then she did what she’s always done—she faced the challenge.
“I have to be proactive. I can’t be depressed about it and be like ‘Why me’ or ‘Woe is me.’ I can’t do any of that.”
At 36, Froso was diagnosed with polycystic kidney disease. The progressive disease replaces healthy Kidney tissue with cysts and the kidneys eventually stop working.
It’s why she’s on a mission to find a kidney donor.
Her disease
Polycystic kidney disease is genetic, even though no one in her family has ever had it. Doctors tell her it’s a mutation.
It started with a small pain and elevated blood pressure.
They ordered an ultrasound. On the screen, there were all these cysts.
“I had no experience with any kind of serious medical things because I was 36. I was healthy otherwise. I thought that those were tumors.”
They told her she had polycystic kidney disease, but no one could tell her much about it so she stayed home for two days and took to the internet.
“By the end of the second day I was very unhappy with what I was reading,” Froso says.
She ended up going to the Rogosin Institute in New York, a “kidney hospital.”
At Rogosin
Froso was a regular patient there.
When they told her there was nothing they could do for her, she stopped going.
“I stopped going after a few years because it was just tiring and time-consuming to just drive there for a urine test and a blood test.”
More research
She went for second and third opinions. Everyone said the same thing.
“There’s nothing we can do for you. There’s no medication. I’ll see you in 20 years when you’re having problems.”
She found a kidney specialist closer to home that she likes, coincidentally the same nephrologist that first diagnosed her.
Still, there was nothing to help her.
Today’s medications are useful to slow the progression of cysts when caught early enough, but they were created too late to benefit Froso.
She had considered anti-rejection medicines out of Europe when she was younger because they also slow the progression of cysts, but those drugs weren’t approved in the U.S.
“I used to tell my dad if I ever get arrested and they call you it’s because I’ve ordered medication from another country. But I never did it.”
Recent developments
This past year, her kidneys got worse.
“I always hoped and prayed that it wouldn’t happen but here it was like almost out of nowhere.”
It was so bad she had to start dialysis in June.
On dialysis
She goes three times a week, hooked up to a machine for 3 hours and 45 minutes. The process cleans her blood and removes excess fluid.
It’s cold. It’s uncomfortable and it leaves you exhausted.
“It’s like running a 5K in two minutes,” she says.
Sitting across from her is her 83-year-old father, Dimitri.
“He has chronic kidney disease which happened from medication so it’s entirely different from what I have.”
He was prescribed medication for migraines that damaged his kidneys. He’s been on dialysis for eight years.
Seeing her in the same situation has been painful.
“I could tell from the beginning when I first started I could see the sadness in his face and his expression from seeing me 30 years younger than him sitting across in another chair.”
She’s so young
It’s unusual for someone of Froso’s age to be receiving dialysis. She’s the youngest person in the room where she gets treatment.
“Nurses are behind the curtain, whispering how young I am. And how ‘oh my God It’s so sad.’ I can hear them. They’re bringing one after the other to see how young I am. I’m like ‘oh my goodness.’
She maintains an upbeat attitude, the same attitude she used with her breast cancer, which has been in remission for five years this month.
“People are more sad for me than I am for myself,” she says. “Just because I’m on dialysis life doesn’t stop.”
Finding a donor
Froso is looking for donors that have the most common blood type, O positive.
That makes it hard to find organs because it’s a blood type that everyone can receive so there’s high demand for O positive kidneys.
She’s on the transplant list at St. Barnabas Hospital in Livingston, New Jersey and she’s testing at the University of Pennsylvania in Philadelphia and the Cleveland Clinic in Fort Lauderdale.
It could be eight to 10 years before Froso finds a donor.
The donor process
Those who want to be donors for Froso but don’t match can still donate their kidney in a sharing network.
The kidney would go to a recipient who does match you, then you would be eligible to receive a kidney at some point should you need one in the future.
But people willing to donate a kidney to Froso might not be so eager to give to a stranger.
“I understand that. It’s a big deal,’ Froso says.
Educational
Froso is documenting her experience on Facebook, trying to educate people about kidney disease and organ donation. She’s surprised when people tell her they don’t know what dialysis is and that you have to be on it for a lifetime.
Her background
Froso lives in New Jersey not far from her parents, Dimitri and Elena, who are both retired.
Like many Greeks, she helped her father run his restaurant, The Coffee Shop, for 36 years before opening one of her own.
About a year ago, she went to work for a corporate relocation company.
“It was a lot less stressful.”
Her family came to the United States in 1974 after the Turkish invasion of Cyprus.
“My parents basically lost everything and started from scratch,” she says.
They came from the city of Famagusta, northeast of the green line.
When her father arrived in the U.S. he worked at two restaurants to support his family while studying for an electrician’s license.
“He learned a lot of things about cooking,” she says. One day when the restaurant chef didn’t show up, he filled in, launching a successful career as a chef and restauranteur.
“My dad was a celebrity chef before celebrity chefs. Food critics would come from New York and ask for his recipes. He never gave them.”
In 1984, he opened The Coffee Shop.
Froso says he’d still be working there if they hadn’t forced him to sell it and retire five years ago at age 78. He liked the customers who were more like family over the years.
Froso was raised in a Cypriot Greek household. The family still attends St. George’s Greek Orthodox Church in Piscataway, New Jersey.
The invasion of Cyprus
Froso was only 7 when the Turks invaded Cyprus. They were celebrating her mother’s cousin’s marriage and her father had gone to the capital to get visas for them to visit family in the United States.
“While my dad was gone, they started the emergency broadcast over the radio.”
Her mother was terrified the Turks would bomb the capital while their father was there.
Fortunately, Froso’s father heard the announcement and turned around.
A week or so later, her father was conscripted into the military and assigned a post. The family stayed with neighbors.
Then the Turks started to bomb.
“I remember going to the window and looking outside and seeing the planes actually drop bombs,” Froso says.
They drove to another town with British bases hoping they’d be safe.
“We had no idea where my dad was. My dad didn’t know where we were.”
After a couple of days they returned home and found her father sitting on the front porch waiting for them.
A few weeks later, word got around the Turks would be bombing again.
“My mom said to my dad, I don’t care if they throw you in jail, you’re not going and we’re keeping our family together.”
By this point, the family had visas so they could travel to the United States, but Froso’s father had to stay behind.
They took a boat from Cyprus to Greece, and then flew to the United States, arriving Aug. 30, 1974. Froso’s father joined them later in October.
“It was weird as a kid because as a kid you don’t get the severity of it. You see your parent worried and it does affect you,” she says.
They should also contact her St. Barnabas organ donor coordinator, Allison Mooreman, directly at 973-322-5082.
