Mahendra

Born March 1975 | Margate, Florida

Living with FH

“I really believe I'm lucky. There are people who are diagnosed with cancer and have six months to live. Even if I can't find a cure, my life can be prolonged with medication, with diet, with exercise... There's a lot that can be done.”

Mahendra is the owner of The Corner Porch Restaurant in Delray Beach, Florida that specializes in filling, healthy cuisine. Mahendra’s experiences with FH have greatly informed the dietary characteristics of his menu avoiding excessive fat and cholesterol. He had his first known heart attack at 24, although he had minor cardiac events starting as early as 17. He manages his FH with a combination of statins and an injectable PCSK9 Inhibitor (evolocumab). With medication, diet, and exercise Mahendra maintains a busy professional life, as well as spending time with his wife and son, who currently attends a local university.

Mahendra woke up before dawn with an unusual feeling in his chest. He tossed and turned in bed, trying different positions to see if he could relieve the discomfort, but the low-grade pain persisted. To his chagrin, he had disturbed his wife, Chandra, who was trying to sleep next to him.    

 

“What’s going on?” she asked sleepily.    

 

“I think I’m having heartburn,” he replied in a low voice.

 

Despite it being a Sunday morning, he had work starting at 8am. Mahendra got up and started his morning routine with a shower. The discomfort was still there. He felt uneasy. He never had heartburn before, and it seemed bizarre that he would be experiencing it now. He and Chandra were both from Guyana and shared a love for flavorful foods like spicy curries, pepperpot, and roti—part of the nation’s eclectic cuisine heavily influenced by Africa, the middle east, China, India, Europe, and indigenous nations—but acid reflux had never been an issue.
    
“Are you feeling any better?” Chandra asked as Mahendra dried off.
    
“No,” he said. “I’m really not.”
    
Chandra’s face expressed concern. She knew that her husband had a full day ahead of him at the pharmacy that he managed. The staff rotated the responsibility of who had to open on Sundays, to keep the burden equal among employees. Fairness was a virtue her husband held with little question—as was hard work—and she knew he intended to open the store that morning, regardless of how he felt.
    
“Maybe you should stop into the clinic?” she asked.

“Yeah,” said Mahendra. “I’ll stop in after work today and get it checked out.”
    
Chandra was expecting that response. “No, why don’t you go in before work. Whatever is going on, it was painful enough to wake you up. I want you to get it checked out.”
    
Mahendra paused, furrowing his dark eyebrows. His inclination was to go to work. It was too last-minute to call in—that would be an inconvenience for his co-workers—but Chandra had made her point and wasn’t one to accept excuses. He also had to admit that the heaviness in his chest had only increased, and that there was a walk-in clinic only a few blocks away. It was still quite early, and with any luck he could get checked out at the clinic and still make it on-time to work.

Mahendra walked briskly to the clinic. The morning sun was ascending over the ocean, illuminating the palm trees of his neighborhood in Margate, Florida. Mahendra loved the warmth of Florida, his new home. He had spent most of his youth in the chilly air of the Bronx, where he moved at age four with his mother and three siblings from tropical Guyana. It was in New York that he met Chandra, and the two fell in love. They gave birth to Anthony there, and only after his birth, they began considering a change in scenery. Anthony was now two years old and Mahendra pictured him sleeping soundly at home. Relocating to Florida was a fresh start for them; a new beginning in a new place.
    
He approached the counter and told the intake nurse what was going on. She had him fill out some brief paperwork and led him into an exam room to take his vitals.
    
Mahendra smiled at her as she took his blood pressure and heart-rate, but she was not smiling back or responding to his affable quips. She asked him about the sensation. What did he eat the night before? Had he ever experienced heartburn like this before?
    
“Is there any other reason you can give me for why you feel this way?” she implored.
    
“No, I really can’t.”
    
The nurse left the room. Time crept forward. Mahendra repeatedly glanced at his watch. He was becoming impatient sitting on the exam table. He considered picking up his phone and calling in. Just then, the nurse returned.
    
“Can you tell me what’s going on?” said Mahendra.

“I’m running late to work. Is there anything you can give me and let me go?”
    
“I’m sorry,” the nurse replied. Her face was stern. “I’ve called you an ambulance. You’re going to the hospital.”

Mahendra was quickly admitted to the hospital. There he had a heart attack. The doctors operated on him that evening, ballooning one of his arteries, and placing a stent in his upper-left ventricle. He was only 24 years old.

“The first time I had a heart attack I was in shock, because I didn’t know what was going on. The second time around, I was more worried about my son—he was five years old. My wife was upset. I could see the stress in her eyes—the recovery, the what-ifs. My mind was on them.”

“I have a lot of empathy, but I’m very realistic. I think it has a lot to do with what I’ve been through, and the times that I felt that this one could be my last.”

Over the next decade, Mahendra would continue to find himself on the operating table. He had another four heart attacks, and survived all of them, thanks to his ability to recognize symptoms early. He was often able to drive himself to the emergency room before the heart attack commenced. “The initial feeling for me was almost being short of breath,” he says. “I felt like I was laying on the floor and an elephant was standing on top of me. I could breathe, but it was hard. It’s pressure, not pain.”

However, the repeat arterial blockages were becoming harder to alleviate, surgically. “I’ve had seven stents placed in me, and been ballooned four times,” he says. “With my last heart attack, they couldn’t put in another stent.” Instead, doctors had to wean him off all of his medications so they could do a bypass. “They removed arteries from my leg and bypassed five of my arteries.” The repeated surgical interventions worked to save his life, but are quantifiably limited. “There’s only so many times they can do that. There’s only so much room to bypass and bypass.”
    
Despite the severity of Mahendra’s symptoms, answers came slowly. He started to learn more about his family’s history, especially about members on his father’s side—many of whom had experienced several cardiac events themselves. With the help of cardiologists, Mahendra learned that his heart troubles were hereditary, and that his body was over-producing cholesterol—the result of an inherited genetic condition called Familial Hypercholesterolemia or FH.

Mahendra started to get regular treatment for his FH. To augment his cholesterol medications (including statins), he started apheresis, a process where the blood is “cleansed” of its cholesterol and returned to the body, similar to dialysis. However, because of his FH, as soon as he was done with apheresis, cholesterol would begin to accumulate in his bloodstream again, meaning he would need to undergo the process frequently. “It was tough on me,” he states. “Going every two weeks. I would feel very tired and drained, sometimes nauseous. I essentially lost a day.”
    
Eventually, difficulty with the insurance companies forced Mahendra off of apheresis. “I found that it would be easier to try something new,” he says. “They wanted me to start from scratch each time—to prove that I needed the medication. I’ve had this condition for over ten years, and you want me to prove it?” Instead, Mahendra opted for an injectable PCSK9 inhibitor, for which, despite the high cost, his insurance agreed to cover.
    
Finding a balance has been critical for maintaining healthy cholesterol levels. Mahendra remains active, takes his medications, and eats healthier, although never dogmatically. “It’s about everything in moderation,” he says, reiterating his mantra. However, simply surviving with FH would not satisfy Mahendra. A profound need awoke inside him to give back. He felt the drive to dedicate himself to something larger than his own health and wellbeing—and through this devotion he would find fulfillment.

It was the oldest building on the block—a historic structure with original timbers in it, dating back to 1907, when Delray, Florida was still an agricultural town, famous for growing citrus and palms. Looking at the peeling paint, loose hinges on the doors, rotting wooden floors riddled with termite damage, and the old wiring, Mahendra became elated with a vision for the future.
    
Behind the decay, he envisioned a lively, bustling restaurant: a full bar, fresh paint, art on the walls, gardens in the yard filled with fresh herbs, with seating upstairs, downstairs, and of course, on the expansive porch. He saw a way to take his hardships and knowledge—the reality of living with FH—and bring them to the table for his guests. He imagined dishes with genuine inspiration, lots of flavor, fresh ingredients, all with a mindfulness toward moderation that was missing from the other establishments in this Floridian tourist town whose taste tended more toward rich than modest and healthy.
    
“What do you think of the place?” Mahendra asked Jason, his brother-in-law, who accompanied him that morning to see the space. Jason was an expert on light construction and building codes.

 

“For what?”

“Every employee I've had since day one is still here. They've stayed on, even when we've almost had to close our doors.”

“For a restaurant.” Mahendra began spatially laying out his vision and Jason began inspecting. He checked the windows to see which ones opened, tugged at the siding to find loose boards, and surveyed the pipes for leaks, taking scrupulous notes on what would be needed.    

 

“It’s going to be a lot of work,” he concluded. “It hasn’t been cared for in a while.”    

 

Despite the fact the building recently had been operational, it only had seating outside, leaving the interior space unattended. Mahendra’s vision included indoor and outdoor seating, and would involve rehabilitating the entire property.    

 

“So, what do you think?” Mahendra was looking for a decisive opinion.    

 

“I think it can work,” said Jason. “It’s gonna take a lot of elbow grease, a lot of time, a lot of sweat, but I can see what you’re trying to do.”    

 

Mahendra stared back through the cobwebs on the stair-posts and his gaze wandered up the staircase, one step at a time. He understood the arduous task that lay ahead, but his mind was set. He belonged here.

Staring out at the busy street outside, Mahendra tucks his head back through the bright red door to look over his numbers from the weekend. It could be better, could be worse. He takes his glasses off and rubs the bridge of his nose. His eyes are tired. It’s Monday, his day off, but there is still much to do.
    
He walks by the bar and runs his fingers along the stone surface, soothed by its regularity. The quietness of the space strikes him. Just a day before, it was full of gregarious guests dining upstairs to celebrate a 90th birthday party. The meal was served family style—appetizers with healthy dips, varied salads, and braised lamb and chicken for the main course—all portioned to meet the exact needs of the group.
    
The Corner Porch Restaurant has no walk-in refrigerator, and the kitchen feels like the galley of a small yacht—narrow, with no room for more than a couple cooks at a time. The food comes in fresh each day, and is often sourced locally. Most importantly, Mahendra is using the restaurant to teach moderation, offering healthy meals without overtly declaring it health-food. He hopes to use his business as a stepping stone, to raise money and awareness for FH foundations, something he would be hard-pressed to do without a successful business.
    
Mahendra knows the industry he chose is brutal and demanding. The last year-and-a-half has been full of moments where he questioned what he had gotten into; when he had been close to quitting; when the numbers just didn’t add up. But behind those numbers, those bad days, he maintained his vision, with the help of those around him.

Jason stops in, pencil in hand.
    
“I got my list for the hardware store.” He gives Mahendra a look to make sure there isn’t anything new that’s popped into his head.
    
Jason quit his job of 25 years to help The Corner Porch materialize, and he continues to do the nitty-gritty tasks each day to keep the place open. He and Mahendra have grown to be true brothers, supporting each other in a show of familial loyalty. Mahendra tells Jason that he can’t think of anything else and turns to stare at the upcoming week’s schedule on the wall. He’s never put his name on it. He knows he’ll be here each day, all day.

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