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Faith complicates a young mother's life-or-death decision on lung transplant

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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."

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