When belief and blood disease clash

A hemophiliac becomes a Jehovah's Witness. Does this act imply a death wish? Not for one man who has been both for 30 years.

St. Petersburg Times/April 9, 2001
By Sharon Tubbs

Pinellas Park -- A smiling woman and boy knocked on John Wortendyke's door one morning with some newsprint magazines, study workbooks and what they called "the truth."

They were Jehovah's Witnesses. From talking with others in passing, Wortendyke knew Witnesses believed blood transfusions were sinful. As it happened, he was a hemophiliac who depended on another person's blood to do the clotting his own could not.

He invited them in, though. They made a good case for their religion. And the more Wortendyke compared his King James Version to their New World Translation, the more he wanted to be baptized a Witness. But, first, he would have to make their ways his ways.

About four months later, Wortendyke was having another hemorrhage, like the ones he'd had so frequently all his life. He got in his Dodge Dart convertible and headed to the emergency room for what would have been his 900th-plus transfusion. And he was only 21 years old. Wortendyke had the routine down pat: He could greet nurses by name, tell them how many units of blood it would take this time.

He waved goodbye to his toddler son and wife, Leslie, standing in the doorway. "Goodbye, Daddy!" little John said. That got Wortendyke thinking as he crept along the road. This could be goodbye for real, he thought. Anything could go wrong with a transfusion. If for some reason he died, he would die never having proven his belief in Jehovah.

Wortendyke turned his car around and retraced the three blocks home. He never went to the hospital that day. Weighing the strength of faith against the fear of death, he vowed never to take another blood transfusion, knowing the decision could kill him. It was November 1970.

Topic of debate

The refusal to accept blood transfusions has been a topic of debate for years, pitting the beliefs of Jehovah's Witnesses against doctors' obligation to do everything possible to save lives.

For Witnesses, "drinking" another person's blood -- symbolized by a transfusion -- represents an egregious sin. They believe blood is sacred.

Consider, they say, Leviticus 7:26-27, as written in the New World Translation: And you must not eat any blood in any places where you dwell, whether that of fowl or that of beast. Any soul who eats any blood, that soul must be cut off from his people.

For doctors, a worst-case scenario is losing a patient who might have been saved by a transfusion.

More doctors and hospitals today are accommodating patients who don't want blood transfusions. One example of the shift toward patient choice is the emergence of bloodless surgery centers, one of which opened at Tampa General Hospital in February.

Dr. Tom Bernasek, the medical director of Tampa's bloodless medicine and surgery program, said during a press conference that some surgeries are easier to perform using bloodless techniques than others.

The centers assure alternative procedures to accommodate those who don't want transfusions. Robin Atkins, coordinator of the Tampa center, says it is one of nearly 90 such centers in the nation.

Several bloodless procedures exist, including the use of a machine to recycle the patient's own blood during surgery and drugs that increase red blood cell count beforehand.

Blood transfusions today generally don't involve whole blood. Instead, elements of blood, such as platelets and red blood cells, are used. But Witnesses don't believe in the exchange of those major blood products either.

Bob Mackey, a Jehovah's Witness from Tampa, has fought for 35 years for widespread bloodless techniques. He helped pinpoint a network of doctors throughout Florida willing to operate without the option of transfusion. The list was scant in the 1970s. "Originally, 30 years ago, I had to take them to West Palm Beach," said Mackey, "(Doctors) wouldn't do it here."

While doctors were slow to forgo transfusions for the general public, to do so with a hemophiliac was even more rare. According to the Web site of the Florida chapter of the National Hemophilia Foundation, hemophilia is an inherited, lifelong bleeding disorder that interferes with the blood's ability to clot. Its effects range from mild to severe.

Hemophiliacs number about 17,000 in the United States. For decades, transfusions were considered to be the only alternative to death for severe hemophiliacs such as Wortendyke.

Living with doubt

In 1970, Wortendyke asked a fellow Witness to care for his family should he die while "keeping integrity to Jehovah on the blood issue." Without a transfusion, doctors told him, he would live only about six months.

His mother said she was not aware of a history of hemophilia in the family. Jomyra Wortendyke had raised him to be a Sunday morning churchgoer.

When her son was well enough, she would dress him for worship at various Protestant churches. "When he became a Jehovah's Witness," Jomyra Wortendyke said, "I just felt like he was committing suicide."

Wortendyke's father, Earl Wortendyke II, helped establish Rio Vista Presbyterian Church in St. Petersburg. Still skeptical of his son's beliefs, Earl Wortendyke II died just months before his son was baptized in 1971.

Leslie Wortendyke was cozy in the pews of an Episcopalian church when her husband decided to convert. In time, though, she began to believe as he did. She was baptized a Witness in 1972, about a year after Wortendyke.

"I felt, well, it means so much to you that you're even considering something like this," Mrs. Wortendyke said to him during an interview. "As your wife, I owe it to you to at least look into it."

The Wortendykes started using ace bandages, ice packs and Tylenol. At least one bleeding episode a week was not unusual for him. For severe hemophiliacs such as Wortendyke, hemorrhages occur often in areas near joints and can be set off spontaneously or with the slightest movement or bump against an object.

Some hemorrhages, especially those occurring in internal organs, can be fatal without transfusion, said Andrew Hano, Wortendyke's hematologist in Largo. But most hemorrhages are generally less serious. They eventually develop hard masses of blood that look like knots or bumps, which doctors call hematomas. The hematomas eventually cause the bleeding to stop, even without a transfusion, Hano said.

The pain from hemorrhages can be unbearable, Hano said. Also, allowing blood to regularly build up near the joints eats away at cartilage and causes arthritis. In many cases, transfusions stop the bleeding faster and greatly reduce the long-term effects, Hano said.

His doctors back in the '70s were right about one thing. About six months after Wortendyke stopped getting transfusions, he had a severe hemorrhage in his shoulder. Tylenol had no effect; the pain was too intense. It was off to Bayfront Medical Center in St. Petersburg, where Wortendyke used to get transfusions. No blood this time, Wortendyke told the staff. He just wanted some strong medication to ease his suffering.

Wortendyke says the doctors wanted to treat him with a transfusion. He called elders at the Jehovah's Witnesses Kingdom Hall. They suggested Suncoast Hospital in Largo. Doctors there monitored Wortendyke's condition and injected him with painkillers.

In time, Wortendyke recovered, only to face another crisis seven years later in 1978. In his kidney, the hemorrhage could not be soothed with bandages and ice. As his blood content dropped to a near-fatal level, doctors urged Wortendyke to consider a transfusion. He refused.

"If I didn't live out what I know to be the truth," he thought, "I have only myself to blame for it." After three weeks in the hospital, Wortendyke -- by then an elder in his congregation -- was home preparing to speak at a regional assembly of Jehovah's Witnesses.

Bloodless centers evolve

In 1980, Jehovah's Witnesses began establishing liaison committees at hospitals nationwide. They wanted the medical industry to respect their religious beliefs. They will accept medical treatment in general, just not blood. With more communication, they figured, alternatives to transfusion would become widely used and respected.

Within the '80s, the appearance of HIV, the virus that causes AIDS, was making transfusion a dirty word. Donated blood was not tested for AIDS and some other diseases then as it is today. Hemophiliacs were among the hardest hit groups because many of them contracted the virus through transfusions.

And, regardless of religious affiliation, some people across the country were loath to give or receive blood.

Attention turned to bloodless, or transfusion-free, techniques, some of which had already been in use for years, said Dr. Harvey G. Klein, president of the American Association of Blood Banks. Two decades ago, a doctor at one hospital would be using a particular bloodless technique while a doctor at another hospital might be using another, Klein said.

But in the 1980s and 1990s, medical experts started to use comprehensive approaches to transfusion-free medicine. That's where the bloodless centers came in, Klein said from his office in Bethesda, Md.

Hospitals that don't have bloodless centers, such as Bayfront Medical in St. Peterburg and St. Joseph's in Tampa, can and do use bloodless procedures to treat patients. Hospitals with bloodless centers are different in that they have coordinators who act as liaisons between patients and medical staff and keep track of doctors who are comfortable using bloodless procedures. At Tampa General, Atkins said, people looking for medical specialists can call the center to find out who performs bloodless procedures.

"Jehovah's Witnesses for years have tried to interest hospitals in doing this," Klein said. "But most of the country ignored them for many years. It was really the AIDS epidemic that alerted the rest of the country."

Today, according to Witness Mackey, about 1,400 liaison committees of Jehovah's Witnesses regularly work with hospitals around the world. There are some 42,000 Jehovah's Witnesses in the Tampa Bay area.

The effects of hemophilia

Until 1989, Wortendyke worked various jobs as manager of a construction business, a real estate agent, a salesman. Being confined to bed, sometimes for weeks, made it hard to keep steady work. Wortendyke began collecting disability.

That didn't stop him from going with other Witnesses in the field ministry, knocking on doors, arranging Bible studies to get others acquainted with their teachings. Sometimes his joints were strong enough to walk. Other times, he'd take his wheelchair.

In 1993, Wortendyke started using a genetically engineered substance called a recombinant. The substance acted in place of something his own blood was missing, Factor VIII, lessening the impact of the hemorrhages. Whenever he'd have one, Wortendyke injected the recombinant, which helped his blood clot. But by 1998, the long-term effects of hemophilia were unveiling themselves.

Nurses could barely find veins to inject Wortendyke's treatment. "I'd had so many thousands of needles poked into my veins," Wortendyke said. "They just get tough, they get very thick walls on them, they get scarred and they get hard to get into."

Furthermore, the hemorrhages caused his joints to deteriorate. Wortendyke had a hip and knee replaced, as well as having a device implanted through which medication can be injected more easily. In each case, Wortendyke says, he took drugs leading up to the surgery to build up his red blood cells.

In February, he had his left shoulder replaced at Tampa General Hospital. Thirty years have passed since the Witnesses appeared at Wortendyke's front door. Now 51, he spends his time doing research on his computer or typing up talks for his turn to speak at the kingdom hall. If he feels up to it, he might make dinner before his wife returns from her job as a receptionist for a McDonald's restaurant regional office.

He can't get out to do field ministry as much as he used to, but chances to evangelize don't pass him by. The day he went into surgery last month, Wortendyke says he told "the truth" to a medical professional helping him.

He also meets weekly with a 19-year-old man, teaching him how to be a good Witness. The goal is to give Jehovah his best effort, or to be "whole-souled," as Witnesses say.

Would he be healthier today if he had accepted blood transfusions? "Probably, it might have prevented (his joints) from getting as damaged," Hano said, adding that transfusions are no guarantee, either.

The hemorrhages keep Wortendyke bedridden at times. The arthritis in his knees, elbows, wrists, ankles and knuckles makes movement awkward and extremely painful. He can't inject his own medication. A nurse comes to help when he is home alone. Yet, he says, marveling at the simple fact that he is alive, "The body is, truly as the Bible said, wonderfully made."