Faith complicates a young mother's life-or-death decision on lung transplant
Wednesday, February 17, 2010
Maribel Perez breathes in short puffs, panting almost, through a hole cut into her trachea and covered demurely with a patch of gauze. Clear tubes connected to a noisy machine in the living room of her small Alexandria apartment pump pure oxygen into her nostrils.
Crossing the room can leave the 36-year-old woman breathless. Crying sometimes feels like drowning.
Twice in the past two years, she 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 here, and if there were, her insurance wouldn't pay. She refused to believe them.
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.
So it was nothing less than shattering when, miraculously, 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.
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, where Perez worshiped. 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." His wife had chosen to die.
Without a transplant, as her doctor, Leslie Kingslow, explained, Perez has about a 50 percent chance of living an additional 18 to 24 months. Less if she contracts another infection. The two childhood bouts of inexpertly treated tuberculosis that so scarred her lungs also make hers a high-risk surgery that would almost certainly require a transfusion; without one, no transplant center would take her as a patient.
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 festooned with pink teacups, 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.