WASHINGTON – Maribel Perez breathes in short puffs, panting almost, through a hole cut into her trachea and covered demurely with a patch of white gauze. Clear tubes connected to a noisy machine in the living room of her small Alexandria, Va., apartment pump pure oxygen into her nostrils.

Twice in the past two years, the 36-year-old has been told to prepare to die. Twice, she has been rejected for a lung transplant because her case was deemed too difficult. Twice, she has nearly been sent home to Peru because doctors told her there was nothing more they could do.

Then, doctors, social workers, friends, family, priests, politicians and strangers coalesced as a veritable army of guardian angels around her. They pushed for treatment and insurance. They found loopholes, hospital beds and ventilators. They prayed. They set up a ”Save Maribel” Web site and Facebook page. They called news conferences in which Perez tearfully pleaded for her life. They raised $60,000 to save her.

DECISION FLOORS FAMILY

So it was nothing less than shattering when, a few weeks ago, one of the world’s largest lung-transplant programs, at the University of Pittsburgh Medical Center, agreed to take her, and Perez said no.

Her reason had nothing to do with breath. It was because of blood.

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Perez had become a Jehovah’s Witness. The religion teaches that blood is sacred, the seat of one’s soul, and that in the Bible, God specifically prohibits the consumption of blood, whether by mouth or through veins in a transfusion. Many Jehovah’s Witnesses carry cards explaining that in an emergency they are not to receive blood and that no medical practitioner will be held liable if they die as a result.

”What’s more important: five, six, 10 or 20 more years on Earth? Or living forever?” asked David Valdez, a Jehovah’s Witness minister at the Kingdom Hall in Alexandria, Va., where Perez worshipped. Breaking God’s law on blood, Valdez explained, could condemn one to an eternity of nothingness.

On Jan. 7, after one of many visits from fellow Jehovah’s Witnesses, Perez told her husband, Lorenzo, that she had signed a medical directive refusing a blood transfusion. Hearing that, he said, was like being slammed in the chest.

”I had been fighting so hard for so long to keep her alive, I felt betrayed,” he said in Spanish. ”I was so angry. It was like I didn’t know her anymore.”

A CALL FOR HELP

His wife had chosen to die. Without a transplant, as her doctor, Leslie Kingslow, explained, Perez had about a 50 percent chance of living an additional 18 to 24 months. And her surgery would almost certainly require a transfusion.

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In a panic, Lorenzo called out to his wife’s army of guardians. They descended upon her like avenging angels. How could she sign something like this? The Witnesses could be wrong, they pleaded; other faiths interpret the Bible differently. When that failed to move her, they called her a hypocrite. Told her that she had wasted so many people’s time and faith. Then they softened. How could she leave her two children after struggling so mightily to stay with them? How could a loving God want her to choose death?

Perez, dressed in hospital socks and flannel pajamas, sat on the side of a twin bed, her head bowed, her eyes locked onto the bare wood floor. When she spoke, it was in a faint whisper. ”Mi relación con Dios es más importante que todo,” was all she said. My relationship with God is more important than anything.

LAST CHANCE AT LIFE

After she signed the directive refusing transfusions, Perez was in torment, she said. She knew she was signing away her last chance at life.

Perez was raised Catholic, but a neighbor who was a Jehovah’s Witness impressed her with his knowledge of the Bible. Two years ago, she began attending services and Bible study classes. Lorenzo went a few times, but it wasn’t for him. Still, he was happy his fragile wife had found a place of solace. What no one understood, she explained later, was that in her darkest hours, when she lay dying in the hospice, and throughout a long, lonely year of hospitalization, the word of God was the only thing that sustained her.

Perez said she feared less for her eternal life than that God would punish her by taking her life if she went ahead with the transplant. ”I was worried God wouldn’t let me live after the operation,” she said.

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A CHANGE OF HEART

Three days later, Perez told Lorenzo she’d changed her mind.

”I began to think how much I loved my children, these marvelous gifts from God,” she explained, gulping for air as tears rolled down her face. ”God loves. He does not demand that we follow rules. The rules are ours.” Her heart told her that God wanted her to choose life.

Perez no longer talks to Jehovah’s Witnesses, nor they to her. It is hard, she said. They are like her family. But the religion ”disfellowships,” or excommunicates, members who disobey its teachings. Contacted by a reporter and asked about Perez, a member of her congregation said, ”She is not a Jehovah’s Witness,” and hung up.

Now, Lorenzo said, it is as if they are approaching the door to the future with the key in their hand, ready to turn the lock. Perez must once more travel to Pittsburgh to sign a new directive, permitting doctors to use blood during her operation. But first, her doctors say she must regain the 14 pounds her already-thin frame has lost since she got out of the hospital. The transplant doctors want to know how she will pay for medical care once her insurance expires. She doesn’t know, but hopes that in Peru, it will be cheaper.

She is still not used to the bustle of activity in the small apartment after so long in a lonely hospital room. Her son, Jason, wanders in to tell about his day before running off to play a computer game. Lorenzo shuffles through the endless paperwork that grows out of a serious illness. And her daughter, Diana, sings her a new pop song, holding the handle of her mother’s portable oxygen tank like a rock star’s microphone.

The two giggle. They pinkie-swear on a secret that they promise to talk more about later, once the lights are out, when they will drift off to sleep, together.

 

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