Finding Relief
As an experienced mother of two teens, Theresa Bowling knew something was wrong with her infant son, Torreyon. The baby, born via cesarean section at 36 weeks in September 2009, would only down a small amount of formula during feedings — and then he'd promptly spit up.
Dr. Michael Underwood, the family's pediatrician at University Hospitals Otis Moss Jr. Health Center, diagnosed the problem as reflux when the boy was 10 days old. "Most babies will have some form of reflux," Underwood says. "But his just continued to get progressively worse." Two formula changes and efforts to feed Torreyon small amounts at frequent intervals in as upright a position as possible failed to provide any relief.
"He wouldn't take even a full 2 ounces at one time," recalls Theresa, a case manager with the Cleveland Health Department's lead-poisoning prevention program. "He would push [the bottle] out. He didn't want it."
Underwood sent Torreyon to UH Rainbow Babies and Children's Hospital, where an abdominal ultrasound ruled out any blockages. Doctors prescribed antacids and tried feeding him with a succession of formulas, first by bottle, then through a tube in his nose — a procedure Theresa and husband Torrey, a meter reader for Cleveland Public Power, continued at home every two hours for more than a month with no success. Underwood ordered the boy, who at 2-months-old was just a mere pound heavier than he was at birth, back to the hospital. A surgical team performed a Nissen fundoplication, a procedure in which the upper curve of the stomach is wrapped around the esophagus to help control reflux, and inserted a feeding tube through his abdomen to his stomach.
One week later, the child's reflux was so severe that he was choking on the contents of his stomach. Only intravenous feedings sustained him.
The couple consulted with Underwood at every stage of Torreyon's treatment. At one point, Theresa was calling him every day. When complications developed after the tube was placed in Torreyon's stomach, Underwood came to the hospital on a Saturday and sat with them while the tube was replaced. He joined them in meetings with allergists, geneticists and gastrointestinal specialists.
"When he looks at kids, talks about them and tries to help them, he treats them as if they're his own," Theresa says. "He tells you what he would do if it were his child. And he would pray with me about it — that I appreciated more than anything."
In February 2010 allergists determined that Torreyon was allergic to dairy, soy and corn. At least one of those ingredients is present in every formula on the market. "[They were] causing an inflammation of his esophagus and his stomach," Underwood explains. "That added to the acid reflux issue." A formula was developed that Torreyon could tolerate, a concoction of canola oil, water, sugar, and prepared vitamin and amino-acid mixes that Theresa could make and feed to her son through his stomach tube. The child also began receiving a trio of medications, two to help control his severe reflux and one to make him feel hungry.
Torreyon was back home and gaining weight when he developed an infection that reappeared every time he finished a course of antibiotics. A trip back to Rainbow revealed the 9-month-old had cyclic neutropenia.
The autoimmune disorder is marked by an up and dangerously down count of neutrophils, which Underwood defines as "primary white blood cells that respond to a bacterial infection." Doctors prescribed thrice-weekly injections of Neupogen, a man-made protein that stimulates the growth of white blood cells.
Torreyon began producing more consistent neutrophil levels at the age of 3. At the same time, another amazing thing happened: He took his first mouthful of solid food.
Torreyon is now a precocious kindergartner who likes to ride his bike and play basketball. "He does not look sickly at all," Underwood says.
Monthly blood tests continue to monitor his neutrophil counts, and he's still on stomach-tube feedings of his customized formula, all administered while he sleeps. But those feedings are supplemented by a growing list of regular foods: all-natural peanut butter or cashew butter on brown-rice bread, homemade marinara sauce on brown-rice pasta, and select fruits and veggies. He recently discovered french fries dipped in ketchup.
"I was really excited," Theresa says. "He doesn't really try things."
Underwood says he and his colleagues still haven't identified the cause of Torreyon's problems. Geneticists suspect a disorder of the mitochondria, the cellular structures responsible for creating energy the body needs to sustain life and support growth. They can't test for the condition until the sugar in Torreyon's formula can be removed or replaced without endangering his health. No one knows when that time might come. But Theresa is grateful, particularly to Underwood.
"He went [above and] beyond by talking to me, by giving me guidance and instruction, by telling me that it was going to be OK and explaining things," she says. "The other doctors didn't."
Gaining Insight
Pat Grace developed an unhealthy relationship with food as a child. The 6-foot-1-inch Willoughby Hills resident was always the tallest kid in her class. "I remember being called 'Jolly Green Giant' a lot," she says. Munching on potato chips and other salty snacks soothed the psychological wounds inflicted by the teasing, even after the name-calling stopped.
"I never got asked to a dance or a prom," says Grace, now 56. "It fed in me that I was undesirable, that I was less of an attractive girl than the rest because I was so big. I think, with that, food became a comfort for me too."
Grace's desire to be attractive, together with the need to ease the fear that she wasn't, launched a 40-year cycle of weight loss and gain. Her last triumph was dropping 80 pounds of baby weight after her second child was born in 1987. She actually became a fitness buff.
"I weighed about 200 pounds and was looking great," she remembers. But she eventually stopped exercising and paying attention to what she ate — the result, she says, of becoming a busy mother.
"I just didn't make myself a priority," she says.
Grace estimates she was 70 pounds heavier when she began studying to become a licensed physical therapist's assistant in 1994. Carrying the increasing extra weight, together with the onset of autoimmune arthritis and the physical demands of her profession, took a toll on her body.
By 2013, she was a 367-pound woman with high blood pressure, elevated cholesterol and blood-sugar levels, and sleep apnea. She had undergone three back surgeries and had both knees replaced. She picked at the baked goods her co-workers brought into the
office, ate a fast-food cheeseburger after work to tide her over until dinner and snacked on potato chips or buttered popcorn at night.
"I could hardly even walk down the driveway and back because my back was so bad," she says. "It hurt so much." Worse yet was the feeling of being trapped by the weight. Diet and exercise no longer seemed like a permanent solution. "I gave up hope, and I gave up dreams, and I gave up desires."
That hope was rekindled in January 2013 after her employer, Lake Health System, announced it would begin covering weight-loss surgery under its health insurance plan, an option Grace had explored and abandoned a decade ago because she couldn't afford it.
"I was thrilled," Grace says. "I thought, I am getting on board if it's the last thing I do!"
Dr. Aviv Ben-Meir, director of bariatric surgery at Lake Health System, suggested Grace undergo a vertical sleeve gastrectomy, commonly referred to as a gastric sleeve. The laparoscopic procedure, performed through five small incisions in the abdomen (the longest is 1/2 inch), reduces the stomach to a sleeve the size of a thin banana. Unlike gastric bypass surgery, the gastric sleeve doesn't circumvent the first 20 percent of the small intestine, where iron and calcium are absorbed most efficiently. It also leaves the thickest, least-pliant portion of the stomach in place, allowing Grace to continue taking arthritis medications with less chance of experiencing the stomach irritation they can cause. "It's a gentler method of helping people feel full with a small amount of food," Ben-Meir says. But he cautions it's a tool for living, not a cure for obesity.
"The part that the weight-loss surgery gives patients is restriction," he says. "You feel full with a small volume of food — initially, it's very small. And then a year or two years out, it's a normal portion, like a salad plate of food for a meal."
Grace returned home the second day after surgery on no pain medication and was back to her regular routine after two weeks, although she had to remain on a modified diet and avoid heavy lifting for six weeks.
"Of all the surgeries I've had, this was the easiest one to recover from," she says. She now weighs 235 pounds and wears a size 16 or 18. Doctors have taken her off two of her three blood-pressure medications. Her cholesterol and blood-sugar levels are normal. The sleep apnea is gone.
Her healthful lifestyle includes participating in a support group for weight-loss surgery patients; attending water-fitness classes and swimming laps two to four times a week; and religiously starting each meal with a portion of protein: Egg Beaters, cottage cheese, Greek yogurt, lean meat.
"Protein is what gives us energy, and protein is what fills us up," Ben-Meir explains. If she's still hungry, she fills up with a few bites of vegetables and potatoes or pasta. Eating is strictly limited to mealtimes.
Although weight-loss surgery patients lose an average of 70 percent of their excess weight, he sees no reason why Grace can't get down to her ideal 190 pounds as long as she maintains her exercise and eating plans. "She's already where most patients are 12 to 18 months after surgery," he observes. Grace believes she can do it.
"I feel lighter in every sense of the word — in my spirit, in my presence, in my being, in my physical weight as well," she says. "What I've gained emotionally and spiritually is far more than the physical weight loss."
Heart-to-Heart
Joseph Topougis thought he'd won the fight of his life. On Oct. 12, 2013, he received the heart transplant he so desperately needed at the Cleveland Clinic. For the last 12 years, the 51-year-old Hudson resident had been living with sarcoidosis, an inflammatory disease in which abnormal lumps or nodules form in one or more organs and change their structure and function.
"It can attack the lungs mainly," says Dr. W. H. Wilson Tang, Topougis' cardiologist at the Cleveland Clinic Heart and Vascular Institute. "But it can also attack the heart."
Inflammation can affect the heart's rhythm and its ability to pump blood. "It's almost like a smoldering damage and dysfunction that progresses into worsening and worsening failure," says Tang.
At first, doctors managed the irregular heartbeat and inflammation by implanting a pacemaker and prescribing steroids. Topougis was even able to continue working as a highway and bridge inspector for the Summit County Engineer's Office.
"I felt pretty much normal," he says. But his condition slowly began to deteriorate and limit his ability to function physically. In mid-2012, he couldn't work. By the time he was scheduled for transplant surgery, he was bedridden.
While the heart transplant saved Topougis' life, it alone could not strengthen
muscles weakened from the increasingly limited use imposed by his own failing ticker. The problem was further exacerbated by inactivity after surgery. When he was released from the hospital Nov. 26, 2013, his movements were limited to lifting his left leg and using his right arm.
He couldn't walk, sit, get up or bathe, dress, feed or groom himself — not to mention more advanced activities such as shopping, cooking and washing dishes.
To help his recovery, Topougis went to Kindred Hospital Fairhill in Cleveland, one of 124 transitional-care facilities in the country owned and operated by Louisville, Kentucky-based Kindred Healthcare. There he spent the better part of the next two months regaining his independence.
"He suffered from severe deconditioning and was not able to perform any of his activities of daily living other than to feed himself," says Dr. Michael Felver, chief medical officer of Kindred's Cleveland market.
Topougis spent at least one hour of every day in physical therapy. At first, therapists raised one leg at a time and asked him to hold it up, then slowly lower it. A couple of days later, they got him into a chair and instructed him to repeatedly kick out one leg, then the other, parallel to the ground. He also began repetitions of arm-lifts.
As he got stronger, they began attaching light weights to his ankles and wrists before he performed the exercises.
Topougis subsequently graduated to standing with a walker, then working on the rehab-room parallel bars, where a therapist on each side held him up with a special belt strapped around his waist while he struggled to take a step.
"I felt like a little kid learning to walk for the first time," he says. "My legs were all wobbly. I wasn't sure which way was up."
Another hour of every afternoon was devoted to occupational therapy. It primarily focused on using the arms to perform the activities of daily living. Tasks ranged from putting together puzzles to dressing oneself in a wheelchair. Topougis remembers picking up cards and balls from a table and removing dish after dish from an overhead kitchenette cabinet, placing each on a counter, then putting them away, one at a time. Topougis also received nutritional and psychological counseling.
"Dealing with the loss of your health and the potential loss of your independence, that can sometimes be overwhelming to people," Felver explains.
He adds that Topougis was extremely focused and motivated in his rehabilitation. "He was able to function as his own
advocate," Felver says. "When he thought he would benefit from more minutes of therapy, he let us know."
Topougis took his first real steps on the parallel bars eight weeks after the transplant.
"It took three people, but I actually walked," he says. "I was able to lift my legs and went all the way across. I hugged the therapist afterward. I had tears in my eyes."
Topougis returned home to his wife, Diane, on Jan. 15. He could walk a couple hundred feet without a walker but still needed help bathing. Today he walks unassisted and tries to exercise at least four days a week at a local gym. His regimen consists of 40 minutes on the recumbent bicycle and treadmill along with some very light weight-training.
Although he still isn't able to return to work, he's taking on less-taxing household tasks such as cutting the grass on a riding mower, cutting back ornamental grasses, even raking a few leaves.
"They did a wonderful job," he says of his therapists. "Except for my physical abilities, which are still a bit limited, I feel like I can do whatever I want whenever I want now. I'm not afraid to go anywhere or do anything."
Taking Control
Last year Jodi Fisher's weight problem became a crisis: She could no longer stand long enough to load and unload the scooter she relied upon for mobility into her car.
"I couldn't drive any longer because I couldn't fit behind the steering wheel," she adds. Getting to her job wasn't a problem — she worked from her Stark County home as an information-services team manager for a local financial institution. But without husband Jay's help, she wasn't able to go anywhere else. And he had serious health problems of his own. A doctor had just recommended he consider weight-loss surgery so he could drop the 100 to 150 pounds necessary to be considered for a kidney transplant.
"He asked me, 'What should I do?' " Fisher, now 48, remembers. "I said, 'I don't think you have any more choices. You need to have the [weight-loss] surgery. And if you do it, I'll do it.' I knew that I had to become more independent. And I knew that it would help him to become more successful if I did it with him."
Fisher wasn't prepared for the number that appeared on the scale when staffers in the office of Dr. Chandra Hassan, medical director of St. Vincent Charity Medical Center's department of bariatric surgery, first weighed her in April 2013. She was 602 pounds — a fact that's still hard for her to accept.
"The last time I was weighed was in 2009. I was 469 pounds at that time," she says. "I knew I had gained some weight. But I just never dreamed that it was 140, 150 pounds."
Fisher's weight was the result of a lifelong taste for junk food and bad habits that worsened over time. Eating, she admits, had become an all-day affair. Major health problems were limited to high blood pressure controlled with six medications and severe arthritis in the knees. But her size still posed a surgical challenge.
Hassan explains that the logistics of accommodating such patients must be considered, everything from getting special beds for them to transferring them from bed to gurney and transporting them to and from the operating room. Inserting IVs and breathing tubes, not to mention accessing the stomach, can be difficult.
"All these patients have fatty livers," he says. "So we have to elevate the liver against their abdominal muscles and then secure it to the operating-room table."
Hassan had never operated on anyone more than 497 pounds. But he agreed to perform a vertical sleeve gastrectomy, commonly referred to as a gastric sleeve. The laparoscopic procedure is less challenging to perform on heavier patients than a gastric bypass and inflicts less trauma on the body.
"She had put in the effort and time to learn about it," he says. "She wanted to reverse the damage that's been done to her body. And she was motivated."
Fisher underwent the procedure on Nov. 21, 2013, four months after Hassan operated on her husband. She now weights 427 pounds, takes two blood-pressure medications and continues to lose weight on three small meals a day — mainly protein and vegetables with only a little bit of carbs and the occasional protein bar or nuts for a snack. Hassan believes his 5-foot-11-inch patient can get down to 200 pounds. "As she loses more weight, the plan is to increase her exercise," he says. Although workouts are still limited to water-walking in the YMCA pool, Fisher increasingly gets around under her own power and drives a new Chevy Impala.
"I really don't have to depend upon my husband or anybody else for anything," she says.
The biggest symbol of Fisher's reclaimed independence, however, is her new job: Her employer recently promoted her to department manager. She goes into the office every day.
"I would have never even dreamed of wanting to advance my career. Getting out of bed was about the most advancement that I was concerned about," she says. "But having had the surgery, my outlook, my life, my whole demeanor has changed so much that when the opportunity became available, I sought it out and was successful."
