Heart-Lung Transplant: A Man Doubly Blessed

7:10 pm Health Stories

Wilkes-Barre Times Leader

July 25, 2004 Sunday MAIN EDITION

BYLINE: DAWN SHURMAITIS Special to the Times Leader

Death wasn’t just knocking at Dan Decker’s door. It had already come inside and sat down for coffee.

The Wilkes-Barre resident was in intensive care at the University of Pennsylvania Hospital awaiting not one, but two organs for transplant: a kidney and a heart. His weight, a once robust 250 pounds, had plummeted to 140.

Extremely malnourished and on kidney dialysis, his failing heart pumping less blood with each passing hour, Decker confronted spending his final days in the very hospice where he’d counseled the dying for 12 years.

“He was damn sick. There’s no question about it,” said Dr. Michael Acker, director of the hospital’s heart transplant program.

The Philadelphia doctor was on the verge of inserting a mechanical heart into Decker’s chest in a last-ditch effort to keep him alive when the 58-year-old suffered another serious blow: cardiac arrest.

Doctors shocked him back to life, but Decker’s family, a close Lebanese clan long based in Wilkes-Barre, prepared for the worst.

There, on the brink of death, Decker hit the organ recipient lottery. With more than 86,000 people in the U.S. awaiting donated organs, Gift of Life found a match for Dan Decker.

Instead of mourning at a funeral, Decker’s family and fiancee could now celebrate a wedding.

“This surgery gave us a new life,” said Janice Swanberry, who plans to marry Decker before year’s end after 15 years of dating. “We laugh every day now.”

On June 10, after three months in the hospital, the double-transplant survivor returned home. “He lost so much weight. But it was the same face, the same smile,” said his mother, Clara Decker, 88. “It’s really a miracle. A miracle.”

Two weeks ago, Decker and Swanberry attended a joint 40th reunion of their high schools – his Meyers and hers GAR. The 5-foot-10 Decker walked without assistance, a feat considered Olympian in scope just weeks before.

“I feel lucky. I feel thankful,” he said. “I have a wonderful life.”

SUBHED: ‘Let’s do it’

Decker’s medical odyssey began in childhood when he contracted diabetes, which strained his kidneys. But as long as he took insulin, his body kept fighting.

In 1990, his good fortune began to fade. His kidneys deteriorating, he began to feel weak and dizzy. Eventually, sores broke out all over his body because his organs could no longer cleanse poisons from his system. Doctors recommended a transplant.

The search for a suitable donor led straight to his younger sister, Donna Bedwick. “It wasn’t even a decision,” said Bedwick, 57, of Wilkes-Barre. “I wanted to do this. He was afraid for me but I said, ‘Don’t be ridiculous. If this could save your life, let’s do it.’ ”

Bedwick, who bears a scar nearly three-quarters around her abdomen, was hospitalized for eight days after the procedure. She couldn’t return to work for two months.

But after the transplant, Decker said, “I did everything – sports, travel, work.”

Years passed. Decker began working as an admissions counselor at Hospice Community Care, which manages a nine-bed facility at Mercy Hospital. After his divorce, Decker’s three kids moved in with him and his mom on Loomis Street. His relationship with Swanberry flourished. Life was good.

But about a year ago, “I just didn’t feel well.”

In January, he caught a virus that pushed his weakened kidneys over the edge, requiring him to start dialysis. Most patients begin the treatment, which removes waste and excess fluid from the blood to prevent build-up, when kidneys have lost 85-90 percent of their function.

“It was the only way to live,” he said of the overnight, thrice-weekly sessions, which meant being hooked to a machine that mimicked his natural organs.

Bedwick and Swanberry took turns driving Decker back and forth to dialysis in Nanticoke. “He’d say, ‘Honey, I don’t want to go,’ like a kid who didn’t want to go to school,” Swanberry said. “I’d put on his shoes and hat and off we’d go.”

Shortly, the dialysis began straining Decker’s heart. Tests revealed more bad news: a blockage in his carotid artery. Because Decker’s heart valves were also leaking, Dr. Joseph Stella at Mercy Hospital advised against open-heart surgery, which could have stalled heart attack or stroke.

Medically, Decker faced a double-whammy. Even if his heart could be fixed, his kidneys were too damaged to function on their own. A multi-organ transplant was his only hope.

“It scared the hell out of me.”

Decker’s doctors at Mercy advised him to seek help at the University of Pennsylvania, where transplants are routine. Still, although the Philadelphia teaching hospital performed 54 transplants last year, only one was heart-kidney.

By coincidence, Decker’s primary doctor at the sprawling hospital turned out to be from the Wyoming Valley.

Raised in Pittston, Dr. Susan Brozena is the daughter of Blanche and Vincent Kaporch of John Street. Her husband, Thomas Brozena, is a West Wyoming native. Brozena said Decker was an excellent transplant candidate because he fit the criteria: incredibly motivated and incredibly ill.

Because he was so sick, Decker was classified as “1A,” which meant he would die within seven days without the procedure.

As a nurse, Swanberry understood how dire the situation had become. “I was always saying: ‘It’s going to be all right. We’re going to get through this.’ But inside, you just don’t know.”

Brozena outlined Decker’s case to the United Network for Organ Sharing (www.unos.org), whose committee rules within 24 hours of requests. Because his condition was critical, Decker got the OK.

Then, the waiting began. Decker needed both organs to come from the same person someone of similar size and with the same blood type. The odds were long.

“He had a rough couple of days,” Brozena said. “But he has an absolute will to live and a great love of life. He was determined.”

SUBHED: True to his word

The call from Gift of Life, the regional system that’s part of UNOS, came at 8 a.m. May 18. A potential match had been found. At that point, the donor was technically alive, but brain-dead.

Immediately, the clock began ticking. A kidney can survive outside the body, packed in ice and saline, for up to 24 hours, but a heart can survive just four hours.

Nurse Sue Chambers, a member of Decker’s transplant team, remembers the scene in Decker’s hospital room that morning. “I walked in and said, ‘It’s a definite go.’ His sister was so happy, she picked me up off the ground. She didn’t even know who I was. She just knew I was bringing good news.”

Said Decker, “That’s when I knew there was a God.”

On “go,” two transplant teams sprang into action: one operating on the now-deceased donor and the other, 18 members strong, preparing Decker.

Before he went under anesthetic, Decker told Swanberry the first thing he’d say if he woke up again was, “Will you marry me?” Although he’d given her a ring two years before, the couple had yet to set a date.

Despite everyone’s optimism, Decker faced serious risks. Performing a double transplant on a patient undergoing dialysis increased the chance of complications, or failure.

Decker’s operation began at 1 p.m. The heart surgery, done first to ensure blood flow, took six hours. At 1 a.m., Decker was wheeled into recovery.

Decker kept his word. He proposed to Swanberry when he awoke.

Immediately, Decker’s kidneys performed on their own. But his body rejected the new heart, which Brozena said is not unusual. The body views new heart tissue as foreign, like an invading army, and fights to defeat it.

Luckily, Decker responded to the drugs that came to his immune system’s aid; he’ll take the drugs for life. While most transplant patients leave the hospital within two weeks, the rejection doubled Decker’s stay.

“It was a great success, particularly considering how ill he was,” Brozena said. “His heart is functioning beautifully. His kidney is functioning fine.”

Brozena attributes Decker’s survival, in large part, to support from family and friends. “They were wonderful. Incredible. They were always here. That’s important.”

Decker, who has health insurance through Blue Cross, had no out-of-pocket expenses. Brozena said a heart transplant alone costs about $120,000. All told, Decker was in the hospital 73 days.

On June 21, Decker transferred to Magee Rehabilitation Hospital in Philadelphia. His body still in shock, he needed time to recover from the operation’s physical assault.

The 96-bed facility helps people after transplants, strokes and brain injuries relearn how to walk, talk and perform daily functions.

For occupational therapist Michelle Marshina, that meant guiding Decker through seemingly mundane tasks such as getting out of bed, showering, dressing and brushing his teeth.

Early on, even putting on a pair of socks was a monumental chore.

During a session two days into rehab, Marshina advised Decker against lifting anything heavier than a gallon of milk, to guard against tearing his surgical wounds. His heart incision is about 7 inches long. The one cut into his abdomen is more than three times that length.

“Feeling a little shaky? Any numbness or tingling?” Marshina asked as Decker tentatively rose from his wheelchair for a few shuffling steps. “Beautiful. You did real well. That’s our goal – to get up and moving again.”

Still hoarse from a recently removed breathing tube, Decker spoke in a careful, halting manner. But his eagerness to share his experience – and to offer thanks – shone through.

“I have a wonderful, wonderful family, and friends. Probably more than anyone could ever ask for.”

His family includes his brother Phil Decker, who owns Hospice Community Care in Kingston, which also operates HCC Home Health and the facility at Mercy Hospital where Decker works.

“We thought he didn’t have a snowball’s chance in hell of getting a heart and a kidney. But lo and behold, he did,” said Phil Decker. “As sick as Dan has been, he never, ever complained about anything. He’s the funniest, most happy-go-lucky guy I know.”

During his hospital stay, Decker said he learned how many people cared through nearly 500 get-well cards, and a constant stream of visitors. His brother, sister, fiancee and three kids, ages 26, 24 and 22, talked to him daily and visited as often as possible.

The hotel stays, restaurant tabs and parking bills added up into the thousands. “I was overwhelmed by how much support I had.”

SUBHED: ‘He’s back’

Today, two months after his life-saving operation, Decker walks without assistance. His voice is strong. He can dress himself. Food tastes good again, and he’s put on 8 pounds. After a month of physical and occupational therapy at home, he’ll undergo another round at an outpatient rehabilitation facility.

“I’m doing fantastic. The doctors can’t believe I’m doing as well as I’m doing.”

Statistically, according to Dr. Acker, Decker has a 92-94 percent chance of surviving his first year, a 75-80 percent chance of making it to year five and a 50 percent chance of making it to year 10, when he will be 68.

“This man really knew what he wanted – he wanted to live. He pushed on. He didn’t give up,” said Acker.

While he can’t risk returning to work until the possibility of infection is less troublesome, Decker might soon sneak into his office and do paperwork.

And yes, he and Swanberry plan to finally marry. The couple began dating three months before Decker’s first transplant. Throughout, they maintained separate homes two blocks apart while each caring for an elderly mother and their kids.

Now, with the children grown, they’ve finally moved in together to begin what is now a bright future.

“He has the same twinkle in his eye,” Swanberry said. “He’s back.”

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