Mystery illness meets its match

Within months, he developed symptoms that baffled Atlanta’s leading respiratory specialists: both his lungs were slowly — irreversibly — disintegrating.

He was only 27. Sid, who lives in Cumming, was fit and in otherwise good health. But by June 2011 he was so weak and his condition so precarious that he was placed on a ventilator in intensive care.

Every day, he risked succumbing to the mysterious illness attacking his lungs. A team of 15 doctors puzzled over his condition and treatment.

And one by one, hospitals around the country rejected Sid for the only operation that might save his life: a double lung transplant.

Sid had fallen in love with his new wife, Vani Vahal, 27, because of her positive energy. He had no idea then how much he would need that energy to stay alive.

“He should have been dead,” said Dr. Matthew Paden, one of several doctors who cared for Sid. “You hear people say so-and-so is in critical condition and it’s overused. In this case, it really applied.”

An unlikely romance

Sid and Vani met through mutual friends at Kennesaw State University, where Sid was studying computer science. Each felt a spark. But Sid fought it.

He wasn’t interested in dating an Indian woman. He’d moved from India to the states with his family when he was 12 and wanted to immerse himself in American culture. A relationship with a woman of Indian heritage meant “being in her clique of Indian friends and that was it,” he thought.

So on their first date, Sid took Vani to Taco Bell for dinner. An unromantic meal of cheap tacos would surely get the message across, he thought. It didn’t go exactly as planned.

“It was an effort to deter me,” recalled Vani, an Emory University student at the time. “But I liked the simplicity.”

She enjoyed the challenge. She thought he was funny. She liked his calm demeanor.

Before long, Sid could no longer deny he was falling for Vani. He adored her vivaciousness, her unflinching enthusiasm. He liked that she had a diverse group of friends. It turned out Vani was an Atlanta native with deep local roots.

A dancer, Vani was pretty and poised with big brown eyes. Sid was tall and muscular. They both loved movies. After a rash of bad ones, they started “Bad Movie Night” — they picked the worst movie possible and laughed at it.

Sid and Vani dated for five years before getting married. They celebrated with two wedding receptions in Atlanta — a small ceremony in March 2010 with mostly family, and a second, enormous ceremony with 300 guests a year later.

In between the celebrations, Sid and Vani embarked on their honeymoon.

A worsening condition

Sid’s ordeal began when the couple returned from their cruise in December 2010. Each was sick when they left the ship — he had a touch of strep; she had bronchitis, they thought. Vani got better after a few weeks. Sid did not.

His shoulders ached. Soon, his hands and feet did, too. They began to swell. By the time they moved to their home in Cumming in May 2011, Sid, a security engineer at IBM, couldn’t help his wife with the heavy work. His hands were too swollen to lift boxes. His feet were too swollen to fit into his shoes.

With Sid struggling to breathe, he was admitted to Emory University’s intensive care unit in June 2011 and put into a drug-induced coma. A ventilator kept him alive.

Vani was in disbelief. She tried to stay positive.

She began every day with a simple refrain: Today is going to get better.

She started a blog called “While You Were Sleeping.” She signed every one, “Love always your wifey.”

Hey darling! You were trying like hell today to get up! The meaning of true love: your husband trying to get up when you talk to him when unconscious!

She clung to any good news, however small. She rejoiced when his lungs absorbed the tiniest amount of oxygen on their own. But in June, his condition worsened. Vani took a leave of absence from her job as a pharmacy technician to be at Sid’s side.

A ‘hope’ device

Vani curled up on a chair outside Sid’s room in intensive care and fell asleep. She was jolted awake when a nurse asked if she was the patient’s wife.

I’m sorry but you need to call in your family now. We don’t know how much time he has left.

In the wee hours of a June 2011 evening, Sid’s body was shutting down.

Trembling, Vani gathered their families. Surrounding Sid, they wept and prayed for hours.

Doctors believed Sid’s only hope was an artificial lung device called ECMO, short for extracorporeal membrane oxgenation.

ECMO machines do the work of a patient’s failing heart and lungs for days or weeks. That’s often enough time for the heart and lungs to rest and recover.

Like most hospitals, Emory had limited experience with ECMO patients. And doctors there had never used one on a patient who might need a lung transplant.

Emory called Children’s Healthcare of Atlanta at Egleston across the street, which had six ECMO machines. At Children’s, the machines help newborns with underdeveloped lungs and young patients battling respiratory illnesses such as pneumonia.

The children’s hospital made a rare exception to treat an adult and Sid was transferred to their care.

Perhaps hours from death, Sid suddenly had another chance.

“We took a leap of faith,” said Dr. James Fortenberry, pediatrician in chief at Children’s. “ECMOs are a hope device. You have to just wait and hope.”

Every day at Children’s, a 15-person team of specialized physicians, nutritionists and physical therapists cared for Sid.

Two nurses remained in his hospital room around the clock. One nurse monitored his ECMO pump at all times.

Every passing day, the risk of complications increased — infection, bleeding in the brain, an air bubble getting into the blood from the tube.

Monitoring the machine’s rhythmic action can mean more than 23 hours of monotony and then seconds of terror if the device malfunctions.

Within days, it became clear the artificial lung device would buy Sid time, but it wouldn’t save his life. His only chance was a double lung transplant.

And his only shot at becoming a candidate for a double lung transplant was for his strength to improve. Otherwise, he would be too weak to survive the transplant surgery.

It was a challenging situation: ECMO patients are bedridden and often sedated. So doctors at Children’s took a new approach. They kept Sid awake and moving. They put bike pedals in his hospital bed.

‘You are a fighter’

Some early mornings, Sid woke up feeling depressed.

Oh, God, I am stuck here for good. I will never recover.

He wanted Vani close to him at all times.

“Her presence was enough motivation for me to want to get better,” Sid recalled. “Knowing I wasn’t there alone fighting kept me going.”

Staying focused on his daily schedule of physical therapy helped morose feelings pass.

He and Vani watched “Law and Order” episodes for hours on end. Vani tried not cry in front of Sid.

“I always wanted him to think that everything was fine and there was no need to worry, but there were a few rough nights crying myself to sleep, not knowing what tomorrow would bring,” said Vani.

Even when Sid was sedated and unable to hear Vani’s voice, she gave him pep talks.

“I am proud of you,” she’d tell him. “You are a fighter and you are going to make it.”

Doctors witnessed her passion, too.

“She had this positive energy,” Fortenberry said. “It would just fill the room. She would know what the best case scenario was and what the worst case scenarios were and she chose to focus on the best ones.”

A risky case

Meanwhile, Children’s doctors looked around the country for a hospital that would perform a double lung transplant on their ailing patient.

Donated lungs are in limited supply but are becoming more common. In 2011, there were about 1,700 lung transplants in the United States.

Children’s doctors made the best case they could: Sid was young and otherwise healthy. He had strong family support. He was motivated to live.

“I knew he had this inner willpower,” said Fortenberry. “And I knew his wife was not going to let him despair and call it a day.”

It was a hard sell. Emory was next door but had never performed a lung transplant on an ECMO patient.

One after another, major U.S. hospitals rejected Sid — Denver, St. Louis, Cleveland.

Paden, a critical care specialist at Children’s Healthcare of Atlanta, understood why so many transplant centers wanted nothing to do with Sid. With a limited number of lungs available for transplant, doctors want their best odds for success. On the ECMO for so long and battling an unknown illness, Sid was a complicated, risky case.

Sid was running out of options. The typical patient at Children’s is on an ECMO machine for 10 days. Sid was entering his fourth week. He had been rejected by 10 hospitals.

“We aren’t going to hide anything,” Dr. Paden told Sid. “If we have good news, we will share it with you. If we have horrible news, we will share it with you.”

“I am not giving up,” Paden told Sid. “We have another list [of hospitals] we can call.”

But doctors also discussed a grim possibility. If they couldn’t get him a transplant, they would have to take him off the ECMO. Sid would die.

In mid-July 2011, Paden sought the advice of the man who developed ECMO in the 1970s — Dr. Robert Bartlett, professor emeritus at the University of Michigan. Bartlett suggested Dr. Charles Hoopes, director of the University of Kentucky’s UK HealthCare Heart and Lung Transplant Program. Hoopes was one of a few doctors who had experience performing transplants on ECMO patients. Hoopes also had experience with patients like Sid who inexplicably suffered lung failure.

Talking to Children’s doctors on the phone, Dr. Hoopes suddenly stopped the conversation.

“What do you think if I got on a plane tomorrow and came and looked at him myself?” he asked.

Hoopes arrived on a Saturday. After examining Sid, Hoopes felt confident the mysterious illness was a fluke that would not attack the new lungs if Sid had a transplant.

Within a couple of days, Sid was flown to Kentucky on a special flight with a transportable ECMO device and medical team. The flight cost an estimated $40,000.

In Kentucky, Sid had to sit in a chair for three to four hours a day to build his strength. It hurt his body so much he’d stare at the TV to distract himself from the pain.

He was once a regular at the gym and loved lifting weights. Now, he could barely sit up.

Sid became moody. Sometimes when Vani walked into the room, he wouldn’t acknowledge her.

“Thank God, she loved me enough to put up with that,” Sid said.

While her new husband clung to life, Vani was afraid to fall asleep. In the darkness, her mind raced with fear.

Vani settled into a routine. She woke up at 10 a.m. and was at the hospital by noon. She’d help Sid with physical therapy, disinfect his room and sometimes bring him dinner.

Sid loathed being alone. Vani wouldn’t leave until he gave her the OK — sometime between 2 a.m. and 6 a.m.

In August 2011, Hoopes decided Sid was a good candidate for surgery. Because Sid’s need for a transplant was considered so dire, he rose to the top of the list. Just then, an organ donor died in another part of the country. The young man was a perfect match.

Once inside Sid’s body, Hoopes discovered a hodgepodge of blood and infection where his lungs should have been. Instead of pink, normal lung tissue, he saw a brown, shriveled organ that looked more like a liver.

Hoopes could never unravel the mystery of what sucked the life out Sid’s lungs. Doctors may never know the cause. “It’s this ‘out of the blue, my lungs are completely destroyed,’” he said.

Sid had spent 55 days on an ECMO machine — one of the longest stretches any patient had been kept alive by an artificial lung device.

Rehab and recovery

After the surgery, Sid had to relearn everything — how to swallow, how to sit up and how to stand.

His body, so accustomed to lying down, pulled downward.

Going from a laying position to a sitting position seemed daunting at first. Physical therapy staff had to pick up his legs and rotate his hips to get him to sit up. He also had multiple tubes coming out the side of his body and multiple IVs.

Then, he relearned how to feed himself and use a fork.

In late August, not long before Sid was discharged, University of Kentucky physical therapists surprised the couple with a romantic dinner, complete with candles and flowers. They served one of Sid’s favorite meals — fettuccine alfredo and ice cream.

It was set up in a spare room, not Sid’s hospital room.

The moment brought the couple to tears. It was their first time alone in months.

When Sid and Vani finally returned home to Cumming in October 2011, they cherished normalcy. They loved snuggling on the couch and taking walks around their neighborhood. Sid couldn’t wait to go back to work.

“Just to be home with my wife and dog, doing things like hanging up pictures on the wall of our new house was really nice,” Sid recalled.

Within a couple of weeks, Sid was back at work at IBM.

So far, Sid’s medical bills have totaled more than $1 million. He had good health insurance and the couple’s out-of-pocket expenses have totaled about $10,000.

Sid must take anti-rejection medication every day for the rest of his life. He can’t eat raw food because of concerns about bacteria. He can’t set foot in hot tubs, which can breed bacteria. He also needs to avoid crowds at malls and theaters for the next year.

But these are minor inconveniences. Doctors see no reason why the couple can’t have children.

At home, they no longer watch “Law and Order.” Sid saw every episode dozens of times in the hospital; he can’t bear to watch the show again.

One of their happiest moments was buying a king-sized bed. Finally, they could sleep together — not as patient and caregiver but as husband and wife.

Sid and Vani know they’ve been lucky. And so do their doctors.

“When you look at all of the things that had to come together — with all of the right people coming together at just the right moment, it was a web of miracles,” Fortenberry said.

What the ecmo does

The Extracorporeal Membrane Oxygenation machine is composed of a pump, an oxygenator and tubing, which pump blood from the body and remove carbon dioxide from the blood. Oxygen is then added to the blood before pumping it back in.

How we got the story

Helena Oliviero met Sid and Vani Vahal in their Cumming home after Sid underwent a double lung transplant. Oliviero interviewed the couple several times for this story. She also interviewed Sid’s doctors. Sid and Vani, along with Sid’s doctors, helped Oliviero recreate scenes and dialogue.

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