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Issue Date: December 2013

Healthy Living

Five patients share their stories of surviving a life-threatening medical condition thanks to innovative doctors and treatments, their own determination and the help of loved ones.
Lynne Thompson

Heart of the matter

Sarah McMicken knew something was wrong with her newborn son, Charlie. His breathing was rapid, much faster than she remembered from when her four older sons were babies. During Charlie's first checkup in January 2009, his pediatrician dismissed it as "just a weird little thing he does."

But the Auburn Township stay-at-home mother's suspicions were confirmed the following week. She and her husband, John, noticed a bluish tinge around the month-old boy's lips and rushed him to Hillcrest Hospital in Mayfield Heights. Charlie was promptly transported to Cleveland Clinic Children's Hospital and diagnosed with dilated cardiomyopathy, a condition in which the heart's left ventricle becomes enlarged and weak, reducing its ability to pump oxygen-rich blood to the body.

"His heart was so enlarged that it was essentially crushing his left lung," recalls Sarah's husband John, who is CEO of the Evergreen Cooperative Corp. in Cleveland.

After almost four weeks in the hospital, Charlie returned home on a drug that relaxed the heart muscle so it could pump more efficiently. Doctors warned that it was a temporary fix. At some point, the child would require a heart transplant — "pretty scary stuff," John says. They hoped pharmaceuticals would allow him to survive for the next six years; he thrived for almost three.

That surprisingly normal period ended Oct. 3, 2011, when Charlie suffered a stroke, the result of blood pooling in his heart and clotting. Dr. Robert Stewart, a Cleveland Clinic transplant surgeon, joined the team treating Charlie at Cleveland Clinic Children's Hospital that week.

"You can imagine how poorly a heart has to be functioning, that blood can pool and form into a clot in your heart," Stewart says. "It should be vigorously pumping blood out."

It was the beginning of a 286-day hospital stay for Charlie and an anxious wait for a pediatric donor. His months in the hospital included one frightening event after another. Although stronger intravenous drugs improved his condition for a time, it began to worsen again. By mid-January 2012, he was throwing up anything he ate and losing weight at an alarming rate.

"You could count his bones," Sarah laments. "He was like a little skeleton." Feedings via a tube inserted through the nose and down the throat to the stomach were painful at times.

"When [you] don't have enough blood flow to the gut to digest [food], it hurts to feed," Stewart explains. "You know you're close to death when that's happening."

On Feb. 1, Stewart outfitted Charlie with a Berlin Heart, a scaled-down approximation of the ventricular-assist device used by former vice president Dick Cheney.

Unlike the version implanted in adults, Charlie's polyurethane disk sat outside his body, on the abdomen. (Technology hasn't yielded a device small enough to be implanted in anyone younger than a teenager, Stewart explains.) Doctors make holes in the skin to accommodate two tubes. One routes blood from the left ventricle to the Berlin Heart; the other delivers blood pumped from the device to the aorta.

In the days and weeks after the procedure, Charlie gradually began eating again, gaining weight and strength. On April 18, 2012, doctors told his parents they had a new heart for him. He'd been prepped for surgery and wheeled into an operating room when Stewart delivered awful news to his parents. A previously undetected source of infection in the donor made the heart unsuitable for transplant.

"That crushed me," Sarah says. "I crawled in bed, and I thought, I can't get out of bed. I can't go back to the Clinic. I'm done with this."

Fortunately, the setback was temporary. On June 28, 2012, Charlie received a heart transplant from another donor. He went home 17 days later and has only returned to the hospital for two short stints since then. He continues weekly physical and occupational therapy sessions to rehabilitate his left arm and leg. Sarah plans on enrolling him in kindergarten next fall.

"He looks fantastic," Stewart enthuses. But the little boy faces another heart transplant at some point, and 3 1/2 years of regular biopsies, conducted to search for the earliest signs of organ rejection.

"Despite our ability to trick the immune system into accepting transplanted organs, there's a low level of ongoing chronic rejection in all [of them]," Stewart says. "For the heart, it typically manifests in the coronary arteries. They slowly get diseased."

Sarah says she hopes Charlie's story will encourage other parents to consider pediatric organ donation before they're ever confronted with the possibility of losing a child. She says she and her husband don't think about the next medical hurdle Charlie may encounter. "We're just trying to keep him healthy and happy, which he certainly is," she says.

In the nick of time

Virginia Gabrie's allergy to cats is so severe that just walking into a home where a cat lived years ago causes a reaction. So she assumed the swollen face and neck she woke up with during a August 2012 motel stay was a result of exposure to the cat hair she saw in the pet-friendly property's lobby. A few days after she returned to her Amherst home, the former Lorain National Bank secretary made an appointment with her family physician, who prescribed steroids.

The swelling persisted throughout the next few weeks, sending Gabrie to the emergency department at EMH Avon Emergency Care Center Aug. 31. The doctor there prescribed stronger steroids at the request of her family physician. The swelling only increased. Gabrie's face and neck became so uncomfortably bloated that she couldn't make her usual preparations for the annual Labor Day weekend cookout she hosts with husband, Dennis.

"When we woke up on the morning of Sept. 3, my eyes were swollen shut," 66-year-old Gabrie says. She headed to the EMH Avon, where Dr. Richard Hausrod, EMH Healthcare's chairman of emergency medicine, was on duty.

Although Gabrie was certain she was suffering from an allergic reaction, Hausrod wasn't convinced. Aside from the swelling, she exhibited none of the usual symptoms — rash, redness, itching, watery eyes, sneezing, difficulty breathing. And the sole symptom she did have wasn't responding to conventional treatment.

"I noticed she had a significant amount of swelling to her shoulders as well as to her neck and face," he adds. "It's not typically something that you're going to see with an allergic reaction."

The CAT scan Hausrod ordered confirmed his initial suspicion: Gabrie had a large tumor, more than 1 1/2 inches in diameter, on the upper lobe of her right lung and a 2 1/2-inch-wide mass in the middle of her chest cavity. Both were pressing on the large vein that returns blood from the upper body to the heart.

"The blood didn't have anywhere to go, like it normally should," Hausrod explains. "It was just much more of a slow trickle."

Hausrod immediately arranged for an ambulance to take Gabrie to EMH Elyria Medical Center.

She was stunned. "I couldn't believe it," she says. "I just kept telling myself, No way!"

Fear set in during the ambulance ride. "I thought, I'm not coming home."

A biopsy revealed the tumors were cancerous — and inoperable. Gabrie underwent 48 chemotherapy treatments over five months at Mercy Cancer Center in Elyria. Thirty-three radiation treatments at Fairview Hospital in Cleveland followed.

Gabrie says she endured "a year of hell," one complicated by back and neck surgeries as well as 10 additional radiation treatments that decrease the likelihood of a cancerous tumor developing in her brain. But the results were surprisingly good. The only remaining evidence of cancer was a small scar on the unaffected left lung caused by radiation therapy. Gabrie recites the comment her oncologist made during a September 2013 appointment: "I never expected to see you in my office a year later."

She met with Hausrod back at EMH Avon to thank him for detecting her cancerous tumors.

"I'm sure someone else would have made the diagnosis ultimately," he says modestly.

Gabrie isn't so sure.

"If it wasn't for him," she says, "I wouldn't be here."

Beginning to heal

Lyndsey Montanaro's long nightmare began Oct. 1, 2010, with a shot. The Walgreens pharmacy technician went to an urgent-care center seeking relief from a needling pain in her right heel, the result of resuming her treadmill runs after her only child was born.

"I think that I did too much too fast," admits Montanaro, a 27-year-old Brook Park resident.

The doctor gave Montanaro a corticosteroid injection in the bottom of her heel, a common treatment for plantar fasciitis, an irritation of connective tissue that runs from the heel to the toes. When Montanaro returned to the center four days later complaining of increased pain and mild swelling, the physician gave her yet another injection in the same spot.

Unsatisfied, Montanaro made an appointment with a podiatrist the next day. An MRI showed she had several severe stress fractures in her heel bone. The podiatrist referred her to Dr. Michael Canales, a foot-and-ankle surgeon at St. Vincent Charity Medical Center's Spine and Orthopedic Institute. Canales reviewed the MRI, confirmed the podiatrist's diagnosis, and put Montanaro's foot in a compression bandage. Aside from swelling and pain, he saw none of the other classic signs of a bacterial invasion.

"There was no redness, there was no streaking up the leg," he says. "She had no flu-like symptoms, nothing like that."

Five days later, Montanaro awoke to find her bandage soaked to the knee in blood. A resident on duty in St. Vincent's emergency room removed the cast and made a gruesome discovery.

"The entire side of my foot, the outside, was black," Montanaro recalls. The resident saw two holes in her heel and two holes on the side of her foot.

Tests showed Montanaro had developed a severe methicillin-resistant Staphylococcus aureus, or MRSA, infection.

"The infection blew out my foot," Montanaro explains.

Canales hypothesizes that the virulent bacillus, infamously resistant to most traditional antibiotics, was introduced deep into the heel by one of the injections at the urgent-care center. Although infection after a properly administered injection is exceedingly rare, Montanaro's case is a reminder that an injection is an invasive procedure accompanied by risks.

"This just shows us the tsunamilike destruction that can occur with MRSA," he adds. The infection was the worst he'd ever seen in a young, otherwise healthy person. Montanaro's entire heel fat pad, a remarkably durable structure that resists shearing forces, had been reduced to the consistency of cottage cheese.

Canales thought Montanaro would lose her foot. "In the back of my mind, I thought that even with heroic efforts, the likelihood of a salvage was extremely, extremely low." 

Canales admitted Montanaro to the hospital, where he spent the next 2 1/2 weeks working to save her foot. He ordered intravenous vancomycin, an antibiotic "so toxic that it can induce kidney failure in some patients." He took her into surgery the next day to remove dead skin, fat, muscle and bone, and he repeated the procedure every other day for a week.

The doctor also arranged for hyperbaric oxygen therapy to help speed wound healing. Each morning she wasn't in surgery, Montanaro would lie in a clear, tubelike pressure chamber filled with 100 percent oxygen for 2 1/2 hours. For weeks after she was discharged, she returned to the hospital on weekday mornings to continue the therapy.

"I knew I had to do it, but it was very claustrophobic," she says. "I would sleep. If I opened my eyes in there, I would panic."

Today, Montanaro's heel is slightly misshapen. Her heel fat pad is gone, along with some muscle, nerve and connective tissue. But she has a functioning, relatively normal-looking foot. She can slowly jog on the treadmill and stay on her feet for a 10-hour shift at her pharmacy.

Canales is still awed by the sight of her walking without a limp. "It's a miracle that she can run," he says.

Neither doctor nor patient takes that miracle for granted. In October 2011, a MRSA infection once again flared in Montanaro's heel bone. Canales scraped the infected marrow out of the bone and packed it with antibiotic-laced pellets and cement.

As a carrier of MRSA, Montanaro is more susceptible to developing another infection. Her bone infection is only in remission. The only sure-fire cure would be to remove the heel bone, which would put an end to her relatively active lifestyle.

Both doctor and patient prefer six-month checkups.

"To me, it's normal," Montanaro says.

not backing down

Donna Kuczynski learned to live with the constant ache in her back, a consequence of arthritis and a narrowing spinal column. The Amherst resident, now 78, ignored her neurologist's repeated pleas to take it easy, even as her legs weakened and she began using a walker. She was far too busy looking after her husband, Ted, who was recovering from complications of a September 2012 hip-replacement surgery.

"I would not admit him to a nursing home," she declares. "Ted was doing so well. He was up on a walker, and he was back into the real world."

But the day came when Kuczynski could no longer ignore her back problems. Last March, she woke up and couldn't move her legs. "I thought I had a stroke," she recalls. Once she realized she could think and speak clearly, move her arms and sit up, she reached for the phone and called friends to help her into a wheelchair and stay with Ted. Then she called the emergency squad.

Kuczynski was admitted to Mercy Regional Medical Center in Lorain. Two days later, she underwent surgery to remove two ruptured disks and secure the vertebrae above and below them with screws.

Dr. Heather Scullin, medical director of Mercy's department of physical medicine and rehabilitation, explains that the disk's eruption — an event that shot its duct-tape-like covering and jelly-like contents onto the spinal cord — was violent enough to cause a true spinal-cord injury. Kuczynski's neurologist believed the damage was permanent.

"He told me, •I do not think you'll even be able to stand up with a walker,' " she says.

Kuczynski quickly proved the doctor wrong. A couple of days after surgery, physical therapists from the inpatient Mercy Rehabilitation Center came to her room and put a walker in front of her. "I stood up," she says. "They were surprised."

Still, her rehab was challenging. The first time she went, a therapist asked her to lift her foot.

"I could not move it," she says. "It was like it was nailed to the ground."

Every day for two weeks, she completed 90 minutes of physical therapy and 90 minutes of occupational therapy. She was also saddled with other health problems, including chronic obstructive pulmonary disease and diabetes, says Scullin, who oversaw Kuczynski's inpatient therapy. But Kuczynski remained amazingly upbeat — "the bright, shining, positive energy on the floor," as Scullin puts it.

Kuczynski relearned to move around in bed. She used an elevated platform to get out of her wheelchair. She started walking short distances with a walker. Three weeks later, she was released from the hospital.

"I came home on the 7th of April — that was my goal date," Kuczynski says proudly. "I walked into the house. I walked in."

Now, she visits Mercy Health and Recreation Center in Amherst twice a week for 40 to 60 minutes of therapy, ranging from water therapy routines to leg lifts on dry ground.

As a result, Kuczynski can drive a car, pump gas, cook, strip beds and do laundry. She can shop, though getting groceries from the car to the kitchen is a cooperative effort with her husband and their walkers. The list of what she can't do is remarkably short: scrub floors, vacuum carpets, bathe in a tub ("There's no way I can get out") or climb stairs normally. Instead, she traverses a staircase sideways, with both hands on the banister. She credits her physical therapists for her progress.

"They were patient," she says. "And they were certainly willing to cooperate with anything that I said I thought I might be able to do."

Quick Thinking

Devender Vittedi used to brag that he never got sick. The married father of two is an energetic sort who likes to run, kayak, canoe and play volleyball, badminton and tennis.

At first, the only vice he admits to is a Westernized version of an Indian diet, heavy on white rice, sweets and fried foods. But the Stow resident later adds a troubling transgression: ignoring his high cholesterol and triglyceride numbers.

"I thought, I'm physically active. I'm fit. It's not going to occur to me,' " says Vittedi, a software developer. "Typical male attitude, I guess."

On Aug. 15, 2010, Vittedi found out he was wrong.

His left hand was numb and aching, an aberration he'd noticed after playing volleyball the previous day. "I thought because I was physically active, I either overdid something, or I may have used my left hand more than normal," he recalls.

It didn't stop the right-hander from playing in a singles tennis match during a picnic at a park in Twinsburg. He attributed his uncharacteristic fatigue to the weather.

"I was serving," Vittedi remembers. "[My opponent] hit the return shot, and it just went by me like a bullet. I didn't even get a chance to return it. At that point, I was told that I just collapsed."

Vittedi blacked out. A friend's son called 911 and relayed a dispatcher's instructions for performing chest compressions to his father. When paramedics arrived six minutes later, they discovered Vittedi was in ventricular fibrillation, an arrhythmia consistent with cardiac arrest. He was rushed to University Hospitals Bedford Medical Center, stabilized and flown by helicopter to the hospital system's main campus.

There, interventional cardiologist Dr. Sahil Parikh discovered Vittedi had a complete blockage of the left anterior descending coronary artery, which supplies blood to about half of the heart. The condition is commonly known as the widow-maker. Vittedi's blood pressure was extremely low, and he couldn't breathe on his own.

"I told his wife that even with the best treatment, his chance of survival was still 50-50," Parikh says. "And that's not survival with normal function. It's just survival, period."

By the time Vittedi arrived at University Hospitals Case Medical Center, he was already on an IV of cold saline solution. The medical team purposely induced therapeutic hypothermia, which cools the body to slow the brain's metabolic processes and protect it from oxygen-deprivation damage. "It really has become the standard of care in just the last few years and has dramatically improved our salvage rate for cardiac-arrest patients," he says.

Staffers packed Vittedi in ice while Parikh prepped for an angioplasty. He opened the artery, inserted a stent to keep it open and restored blood flow to the heart. Then he inserted a small balloon pump in the aorta to support heart function and blood pressure.

"It's on a catheter that we can insert, then remove by just pulling it out," he says.

In the intensive care unit, Vittedi was wrapped in a blanketlike device that cools the core body temperature to 91 or 92 degrees. The medical staff induced a coma to give Vittedi a better chance to heal. Doctors gradually allowed his body temperature to return to normal after 24 hours. They brought him out of the coma after eight days.

"He woke up and started asking, •What happened?' " Parikh says. "He was totally neurologically intact. He just couldn't remember the last eight days."

An associate of Parikh's performed a second angioplasty and inserted stents to open two other blockages in another artery. After a second week in the hospital, Vittedi was released. He continued his outpatient recovery at University Hospitals Rehabilitation & Sports Medicine Highlands office in Warrensville Heights, where he completed four months of cardiac rehabilitation.

He also improved his diet. He's stopped eating meat, satisfies his sweet tooth with 85-percent dark chocolate and replaced white rice with a mix of brown rice and barley.

His physical therapists reassured him he could eventually resume his normal activities. He proved them right by completing a half-marathon in September 2012.

Parikh says Vittedi's heart function is essentially normal. He takes three pills a day: a baby aspirin, a cholesterol-lowering drug and a blood-pressure medication. He admits that he has cut corners when it comes to regular workouts, but he maintains his healthful diet. He's kept off 20 of the 25 pounds he lost after the heart attack. When asked if it has been difficult to change his lifestyle, Vittedi doesn't hesitate to answer.

"I have no choice," he says.

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