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Issue Date: December 2011


Handled With Care

Five patients and their families share their personal stories of recovery. We also talk to the physicians and other medical professionals who helped them through those difficult days.
Lynne Thompson
editorial@clevelandmagazine.com

In a Second, Everything Changed

Tuesday, Oct. 12, 2010, was sunny and unseasonably warm — perfect, Avon Police patrolman Pete Soto thought, for spending his shift on a motorcycle. But the day turned into one of the darkest of his life.

Just before 10:30 a.m., Soto was traveling north on state Route 83, responding to a call about a domestic dispute in a van, when a man in a blue Ford F-150 pickup truck pulled out in front of him.

“He basically blocked the whole road,” the 45-year-old recalls. “There was nothing but ditches on the sides. I was caught. I had about 120 feet, 150 feet to react. The bike hit the driver’s-side door, and I went under the truck.”

Soto remained calm and lucid, even though his left hip and leg were pinned under the vehicle. He even remained conscious during the ambulance ride to EMH Avon Emergency Care Center, then the Life Flight to MetroHealth Medical Center in Cleveland.

But X-rays revealed that Soto had suffered a catastrophic injury: The entire left side of his pelvis was in dozens of pieces. Dr. Heather Vallier, an attending physician in MetroHealth’s department of orthopedic surgery and associate professor of orthopedic surgery at Case Western Reserve University School Medicine, explains that the larger bone fragments usually tear through the major blood vessels that branch off from the aortic system.

“There are a handful of people with injuries like Pete’s,” she says. “Many of them are dead on arrival. They just bleed to death within several minutes.”

Soto was lucky. His femoral arteries were unscathed, and Vallier, one of the very few orthopedic traumatologists in the country who handles severe pelvic injuries, had been called to his trauma bay.

Vallier and a team of doctors and nurses spent the next several hours stabilizing Soto’s condition by pumping blood and fluids into him. Around 1:30 a.m., they wheeled him into the operating room. Vallier began the delicate task of retrieving the bone fragments, most of which were on the other side of Soto’s pelvis. She then reassembled them as best she could using five or six stainless-steel pelvic reconstruction plates to hold them together. A urologist came in and sutured his ruptured bladder.

“Once we retrieved the bone fragments from around the major blood vessels, I was pretty confident he was going to survive,”
Vallier says.

Soto remained unaware of how serious his injuries were until his second week in the hospital. By that time, his thoroughly relieved wife was able to attempt a joke about it.

“When they finally took the breathing tubes, stuff like that, out of me — I looked at my wife and told her, ‘I’m dying,’ ” he recalls. “She goes, ‘Nah, that was last week.’ ”

Soto’s ordeal, however, was far from over. His left shinbone was so badly broken that doctors had to insert a rod into it the next day. Vallier’s 20-inch incision, made in severely injured soft tissue, was slow to heal and required two additional surgeries. Five months after his December 2010 discharge, Soto returned for rotator cuff surgery on his left shoulder, which was dislocated during the crash.

More recently, doctors removed a plate and eight screws that would interfere with a hip replacement, a procedure planned for the coming months. Soto hopes the surgery and continued physical therapy will allow him to walk without a brace, despite some nerve damage to his left leg. He’d like to return to the Avon Police Department in some capacity. And although he sold his own motorcycle this summer, he intends on buying another one.

“I plan on riding again,” he says.

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When the Unthinkable Returns

Jason and Elysia Pasenow thought their son Landen’s medical nightmare ended with his discharge from a San Diego hospital in January 2010. Five months earlier the little boy, then 10 months old, had been diagnosed with acute myeloid leukemia, a rare form of bone-marrow cancer in children. The disease manifested itself as a tumor, in this case behind his right eye.

But Landen tolerated the prescribed five rounds of chemotherapy well, and the tumor disappeared. Jason, a Navy recruiter, and Elysia, a stay-at-home mother of two, celebrated by making plans for the family to visit their native northern Ohio the next summer.

The nightmare returned on that trip.

“Landen just wanted to lay around — he wasn’t his active, happy self,” Elysia recalls. “Every time I picked him up, he would hold his head to the side. He would be real stiff, and he would cry.”

A few days later, she noticed he was struggling to maintain his balance as he walked. Shortly thereafter, on the night of July 17, 2010, Landen was in an ambulance headed from Mercy Regional Medical Center in Lorain, near Elysia’s mother’s home, to Rainbow Babies and Children’s Hospital. His heart rate was dangerously low, and he didn’t seem to recognize his mother. As doctors prepared him for a CT scan, he developed a horrifying new symptom: Every time he fell asleep, he stopped breathing.

The scan revealed a large mass approximately the size of a golf ball at the back of Landen’s head. The leukemia had returned to his central nervous system and bloodstream, and in a way that was literally threatening his every breath. Dr. Kenneth Cooke, director of Rainbow’s bone-marrow transplant program, explains that the tumor was pressing down on the brain to the point that it was on the verge of pushing through the opening where the brain stem and spinal cord exit the skull into the neck – a lethal event.

From Landen’s first fussy day, Elysia had worried that her son was developing something worse than a cold or the flu. The first indication of his leukemia, after all, had been nothing more than a droopy eyelid. But she was still stunned by the diagnosis.

“I was like, ‘How can we go through this again? It was hell the first time,’ ” she says.

Doctors relieved the pressure by drilling a hole in Landen’s skull and inserting an external shunt to drain a buildup of fluid. A few days later, they removed as much of the tumor as they could. Subsequent tests showed the leukemia had spread to his spinal cord.

“He’d only been off chemotherapy for less than six months, and it had come back with a vengeance,” Cooke says.

To force the disease back into remission, Dr. Sanjay Ahuja began administering chemotherapy through an external port installed just above Landen’s heart, a spinal tap and a reservoir placed above his brain. The little boy also received radiation to the brain and spine. But doctors knew that wouldn’t be enough.

“We knew that his best chance for long-term survival would be a bone-marrow transplant,” Cooke says.

Finding an unrelated donor through the international and national bone-marrow registries was complicated by Landen’s Hispanic-Caucasian heritage. Cooke explains that patients like him have less chance of finding a match because fewer Hispanics sign up for testing. (Tests run when Landen was first diagnosed in 2009 showed his older sister, Kailee, was not a suitable donor.)

But the registry yielded five possible candidates, one with a genetic blueprint very similar to Landen’s. He received additional chemotherapy and radiation to wipe out his own bone marrow and then got an infusion of donor-blood stem cells through his chemotherapy port in November 2010.

“Believe it or not, they find their way back to the patient’s bone marrow, and they set up shop,” Cooke says.

Landen had a number of hurdles to overcome after the transplant. The leukemia had paralyzed him from the waist down. “We had to teach him how to hold his head up, hold a cup,” Elysia says. He even had to relearn how to talk. The family moved first to Cleveland Heights, then to North Ridgeville, so he’d be close to his doctors. During the past year, “he’s done terrifically well,” Cooke says.

On June 14, Elysia sent Cooke an email from her cell phone that confirms his assessment. Attached was a video clip taken moments before of Landen toddling across a Rainbow waiting room – his first unassisted stroll since his recurrence. Cooke forwarded it to his entire team with a simple message: “One small step.”

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Getting Back to Life

Rosemary Sirna thought the annual mammogram she scheduled for a weekday morning in May was just another thing to cross off her to-do list on the way to work.

Instead, it was a life-altering experience.

The digital mammogram, performed at Parma Community General Hospital’s Wellpointe Pavilion in Broadview Heights, detected what at first glance appeared to be a cluster of 10 to 12 tiny calcifications in the 54-year-old Broadview Heights resident’s right breast. They concerned radiologist William Noble because of their large number, close distribution and irregular shape.

“If there’s five or more, and they’re grouped together, then I worry,” he says. “And if they’re smaller — 1 to 2 to 3 microns — and if they’re curvilinear and smudgy, not real well-defined, then I worry.”

His colleague, mammogram technologist Denise Nesta, believes they may not have been visible on a traditional screen-film mammogram like the one Sirna had in 2010, which Nesta compares to an old-fashioned black-and-white negative.

“Digital technology gives us a better image,” she says. “The film isn’t dark like it used to be. It’s clearer.”

A needle biopsy revealed that the cluster was a stage 1 tumor the size of a pea. Sirna immediately chose a double mastectomy and reconstruction over a lumpectomy followed by radiation therapy, an option accompanied by more frequent follow-up exams and a higher rate of recurrence.

“I just wanted to get everything out of me, get it over with at one time,” she says. “I didn’t want to have to worry about something coming up [in my left breast].”

Although the July 15 procedure gave Sirna the best chance of eliminating breast cancer from her life, it hampered a return to living it. She discovered that doing the simplest task was difficult, if not downright impossible. A few weeks after she came home from the hospital, she still couldn’t move a computer mouse without experiencing shooting pains in her arm. “Your arms are so stiff that you can’t even raise them,” she says.

Sara Pesut, a physical therapist at Wellpointe Pavilion, quotes a study that shows 80 percent of mastectomy patients report swelling, weakness, stiffness and decrease in range of motion in one or both shoulders, and numbness in the arms or chest. Problems vary depending on the invasiveness of the procedure. She explains that removing lymph nodes from the armpits, for example, causes pain, swelling, numbness and scar tissue, all of which can decrease shoulder mobility. The troubles can persist for years without physical therapy — a step to physical and emotional recovery that some women never take.

“A return to normal activity is such a monumental thing,” Pesut says. “If they can get back to their lifestyles, get back to work and things like that, they start to feel better all the way around.”

Approximately a month after surgery, Sirna took the advice of her surgeon and a nurse-counselor and completed the first of eight sessions with Pesut. The physical therapist spent the first hourlong appointment massaging her shoulders and manipulating her arms. “It was amazing, just the first day, how it made a huge difference,” Sirna says.

Pesut then introduced simple exercises to the twice-weekly meetings to further increase mobility and build strength. She’d have Sirna complete movements such as lifting a cane over her head and lowering it and pressing her hands and forearms against a wall while standing push-up style without extending her arms.

As a result of that therapy, Sirna was able to return to her job as a tech-support manager at Shaker Consulting Group in Beachwood seven weeks after her mastectomy. Although she has regained full range of motion in both shoulders and arms, she still isn’t completely pain-free. And she may need additional physical therapy after breast reconstruction is completed.

“But every day is a little bit better,” she says. “I pretty much have my life back.”

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First Steps to Recovery

Jim Kristoff enjoys doing the tasks most people would rather avoid, things like vacuuming the rugs and lugging groceries from the car to the kitchen.

Perhaps it’s because there was a time when he couldn’t even walk across the room.

During the late 1990s, the onetime Fazio’s dairy-department manager was diagnosed with chronic bronchitis, the result of smoking two packs of cigarettes a day since his teens. “Emphysema set in a few years later,” the 58-year-old Lorain resident says.

He left his last job as a newspaper deliveryman and went on disability in 2003. “I’d run out of breath just walking up to somebody’s porch and throwing a newspaper,” he says. By the time he received a double-lung transplant at the Cleveland Clinic in October 2010, doctors told him only 8 percent of his lungs were functioning.

While the lung transplant saved Kristoff’s life, he credits a program at the EMH Healthcare Cardiac and Pulmonary Rehab Unit in Elyria for keeping him functioning long enough to get one. The series of 10-week sessions, recommended to him by one of his local physicians, is a blend of education and exercise that enables patients with respiratory ailments to live the best life possible.

According to exercise physiologist Penny Swierad, one of the three hourlong sessions each week is partially devoted to instruction in subjects such as breathing and coughing techniques, proper use of rescue inhalers and oxygen, controlling allergens, managing flare-ups, and “energy conservation,” or how to perform common household and self-care tasks with minimum effort.

“They’re simple things,” Swierad says. “But when you can’t breathe, they’re a big deal.”

More important to Kristoff was the exercise component, which consists of time on a treadmill and exercise bike as well as lifting free weights. Swierad says that, like many participants, Kristoff started off slow. During his first sessions in April 2009, he had to get off the treadmill and rest every five or 10 minutes, even though it was set at .8 mph. By the time he completed the program, the treadmill was set at 1.5 mph. “He has a really positive attitude,” Swierad says. That attitude and additional stamina helped him complete everyday tasks like dressing without getting winded.

“I didn’t have to ask somebody to pick this up, move that over there,” he says. “I could do it myself.”

Similarly, the program helped Kristoff with his physical conditioning after the transplant. Like the first time around, he started on a treadmill set at .8 mph. When he finished, it was up to 2 mph, and he was on it for the prescribed 20 minutes.

Kristoff’s main goal now is to drop 60 pounds from his 255-pound, 6-foot-1-inch frame. He even bought a treadmill for the home he shares with his daughter and son-in-law, but he continues paying out-of-pocket for twice-weekly maintenance sessions at EMH.

“I have the terrible problem of getting my butt out of the recliner and onto the treadmill,” he admits. “Paying to go there a couple of times a week gives me an incentive. I know at least I’m going to be doing that much.”

Kristoff’s 6-month-old granddaughter provides additional motivation. His favorite job is taking care of her for nine hours each weekday while her mother and father are at work, something he’d never have attempted before the transplant. And he’s looking to add to his list of chores.

“I haven’t cut the grass or washed the car in years,” he says. “And I still haven’t done it ... yet.”

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The Heart of the Matter

On Dec. 20, 2009, Peggy Brad returned to her Parma home intending to spend a quiet evening with her husband, Adrian. She began making quesadillas then called him to suggest he forego a workout after his weekly soccer game for a home-cooked meal and some time in front of the television. But shortly after 9, Peggy turned to Adrian as they sat on the couch and said, “I don’t feel good.”

Seconds later, she was unconscious.

Adrian, a 32-year-old firefighter-paramedic for the city of North Royalton, dialed 911 and frantically began resuscitating her.

While Peggy’s collapse was a surprise, the condition that caused it was not. In July 2007 she learned she had arrhythmogenic right ventricular dysplasia, an often-congenital disease in which the muscle of the heart’s right ventricle is replaced by fatty tissue, weakening its ability to pump blood. Patients often have abnormal heart rhythms, which can increase the risk of sudden cardiac arrest or death.

“It is a rare condition,” says Dr. Wilson Tang, research director of the Cleveland Clinic’s heart failure and cardiac transplantation section and director of its cardiomyopathy program. “Patients may not realize that they even have the condition until they begin having problems.”

At the time of her diagnosis, Fairview Hospital cardiologist Dr. Anjli Maroo told Peggy the condition was manageable. She received an internal defibrillator that shocks the heart back into a normal rhythm, allowing her to continue working as the co-manager of an Express store at Westfield SouthPark in Strongsville. “I felt good, for the most part,” she says. But the defibrillator was unable to jump-start her heart after she went into full cardiac arrest.

“We realized that her disease really had progressed,” Tang says. “The heart was basically giving out. It’s almost like driving a car that sputters then stops. You can restart it, but you know that something is very wrong.”

Although he mentioned the possibility of a heart transplant to Adrian, Tang began treatment by prescribing medications to suppress the heart’s abnormal rhythm. Peggy felt fine within 24 hours and was released from the Clinic a week later. She remembered almost nothing about the evening. Adrian, however, was so terrified by the experience that he stayed home from work with her.

“I was literally her shadow,” he says.

His concern proved to be warranted. On Jan. 8, Peggy collapsed at her mother’s home and remained unconscious for several seconds. “I felt more faint than anything,” she says.

Three days later, she was transferred from Fairview Hospital to the Cleveland Clinic. Tang was waiting for them with a heart-transplant coordinator. He wanted Peggy to undergo the evaluation required to present her as a transplant candidate to the local Advanced Heart Failure and Therapeutic Committee at its next weekly meeting. Peggy was downright pragmatic.

“I was like, ‘If this is what’s going to happen, then let’s do it,’ ” she recalls. “It just didn’t seem real. I thought, They’re going to find a way to not put me on the transplant list.

But Peggy was placed at the top of a regional heart-transplant list on the morning of Jan. 18. Approximately 36 hours later, a heart-transplant coordinator walked into her room and announced, “We have a heart for you.” By 8 a.m. Jan. 20, Peggy had emerged from one of the approximately 2,000 heart-transplant surgeries that Tang says are performed each year. It was only after doctors got a good look at her heart that they realized just how advanced her condition was.

“You could see through her heart because it was translucent with fat,” he says. “It was amazing that it continued to beat every second, to maintain every bodily function.”

Although Peggy describes the weeks afterward as “not the best recovery,” she remained free of major complications such as rejection, infection and problems tolerating drugs. She went back to work six months later. “I feel 110 percent better,” she says. Simple efforts like walking up two or three flights of steps no longer leave her winded. And, for the first time in years, she’s able to run. Ask her to what she attributes her good fortune, and Adrian answers.

“We don’t believe in luck; we don’t believe in chance — those words don’t affect our lives,” he says. “We believe in God. How else could this happen but through God’s hands?”

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