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.
Four years ago, Perez began getting dizzy and falling. She could never seem to catch her breath. A friend took her to a free lung clinic in the District run by the National Institutes of Health for the homeless and uninsured. There, Mark Gladwin diagnosed severe pulmonary fibrosis. The doctor began to follow her closely. She was so young to be terminally sick. The only way to extend her life was a lung transplant, which can cost at least a half a million dollars. With no money, immigration papers or insurance, Perez's prospects were poor.
In 2007, she was repeatedly hospitalized and sent to a hospice, where doctors recommended that she return to Peru to die in her mother's care. But friends and advocates found the Kaiser Permanente Bridge program, which offers three years of discounted insurance to the uninsured. She healed enough to go home.
In the fall of 2008, she contracted pneumonia. Again, she was hospitalized. Again, doctors told her to prepare to die.
Instead, she spent a year at the Specialty Hospital of Washington, with social worker Paula Hammond calling Kaiser every two weeks for approval to extend her stay.
Hammond arranged for surgeons from Inova Fairfax Hospital, the area's only lung transplant center, to evaluate Perez. They said the operation would be too risky.
Last spring, Laura Wilson, 81, a friend who met Perez through a neighbor and became like a mother to her, learned that Gladwin had moved to Pittsburgh to become chief of the pulmonary division there. She appealed to him: Maribel has insurance now! You can help her now!
Gladwin agreed to see Perez if Kaiser would pay for the transplant and intensive follow-up care.
Perez could not contain her joy. "I want to be a part of my children's lives," she said then. "For a mother, even one more day is precious."
But Kaiser at first refused to pay for the transplant, Perez's doctors said, telling them that Pittsburgh was not in Kaiser's network. Kaiser officials would not comment on Perez's case.
Her advocates wrote letters and sent appeals and, finally, Kaiser agreed to cover the transplant as an out-of-network expense, meaning Perez needed about $80,000 for the co-payment. Her advocates set up a fund through the Catholic Archdiocese of Arlington and had news conferences pleading for donations here and in Peru. Their efforts netted $30,000. Then Wilson found the Ray Tye Medical Aid Foundation in Massachusetts, which agreed to match those funds.
About 1,400 lung transplants a year are done in the United States, compared with 15,000 kidneys and 2,200 hearts. The procedure is fairly new and survival rates are low, averaging five to seven years, said Joseph Pilewski, medical director of Pittsburgh's lung transplant program. It's a therapy of last resort. "If your other option is a 90 percent chance of dying within the year," Pilewski said, "then a lung transplant is a good option."
Perez has no other options, her doctors say. Hospitals in Peru, where Kaiser recommended she return last summer, could not handle her case, they say, nor could her damaged lungs survive a trip there. Caught between borders, political policy and medical ethics, her life hangs in existential balance.
"As a physician, if we were to be distracted by someone's insurance status, their immigration status or other sociopolitical variables . . . then we lose sight of our primary mission: to take care of people," Gladwin said. "Maribel is a young woman. She has young children. She's the kind of person a transplant was designed for. From a social-justice standpoint, you could ask: Why is it fair to give a lung transplant to a 65-year-old with emphysema who's smoked for 40 years and not to a young mother?"
In mid-December, Perez and her husband traveled to Pittsburgh for five days of testing. In a Dec. 23 letter, the medical team deemed her an "acceptable candidate for transplant." She would join about 30 people on their waiting list.
Her army of guardian angels rejoiced. Then, early last month, they noticed she was no longer returning their calls.
After she signed the directive refusing transfusions, Perez was in torment, she said. She knew she was signing away her last chance at life.
She curled into herself on the single bed in the room she shares with her 12-year-old daughter. She blew out short streams of breath to calm herself. She couldn't sleep.
God had resurrected her, lifting her from deathbeds and despair. Was it really His will that she now give up and die?
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 that 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 that long, lonely year at Specialty Hospital, the word of God was the only thing that sustained her. Twice, she'd thought of ripping out the life-sustaining tubes that tethered her to the wall. Her belief in God stayed her hand.
She wanted desperately to do what He wanted.
That weekend, her mother called from Peru and begged her to change her mind and have the operation. Her doctors called. Her sister, a nurse, chimed in from Italy. Her sister-in-law reminded her of another relative, a Jehovah's Witness who refused a transfusion and died, leaving two toddlers behind.
Fellow Witnesses continued to visit and urged her to stay strong, assuring her that just as soldiers die on the battlefield to defend their country, sometimes Jehovah's Witnesses die to protect the integrity of God's law. Lorenzo barred the Witnesses from the house, told the children they could no longer be part of the congregation and threatened that if Perez continued to refuse the transfusion, their marriage of 19 years would be over.
Her children, schooled by the Jehovah's Witnesses, told her they'd be sad if she died but were proud of her for following her faith.
Perez 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. 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, who has difficulty walking into the next room, must once more travel to Pittsburgh to sign a new directive, permitting doctors to use blood during her operation. But first, Kaiser doctors now 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, a fourth-grader, wanders in to tell about his day before running to the living room 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.
