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Desperate for transplant, she's still glad Pa. girl got lungs

Nereida Smith and Richard Smith
Nereida Smith, 56, is waiting for a double lung transplant after her lungs were devastated by a rare auto-immune disease. She and her husband, Richard, live in Cinnaminson, N.J.

A New Jersey woman desperate for a life-saving double-lung transplant says she’s glad a 10-year-old Pennsylvania girl got the organs first.

Nereida Smith, 56, of Cinnaminson, N.J., has been waiting two years for new lungs in the same region that provided Sarah Murnaghan not one, but two, lung transplants last month after a high-profile appeal by her parents and ensuing court order.

But Smith said she was moved by Sarah’s plight even more than her own because no child should have to endure the wait for new lungs.

“I know how hard it is for me; I couldn’t even imagine how hard it is for her,” said Smith. “My first thought was, basically, as sick as I am, I could say if my lungs were to come, I would have given up my chance to give her a chance to live.”

Smith’s lungs are ravaged by systemic scleroderma, a rare auto-immune disease that causes scar tissue to build up inside the body. First diagnosed in 1996, she now suffers from pulmonary fibrosis and pulmonary hypertension, two life-threatening complications, her doctor said.

“She really needs to have a lung transplant,” said Dr. Sergio Jimenez, director of the Scleroderma Center at Jefferson University Hospitals in Philadelphia, who has been treating Smith. “Right now, I think it’s her only chance.”

But Smith, a mother of two grown sons, says she doesn’t begrudge the two sets of lungs that have gone to Sarah, who has late-stage cystic fibrosis.

“If that was meant for me, then God would have given them to me,” she said, her voice hoarse with the effort of talking. “Maybe God wanted that little girl to have her chance.”

Smith is one of 215 people waiting for lungs in Region 2, one of 11 transplant regions nationwide designated by the Organ Procurement and Transplantation Network, or OPTN. That region includes Delaware, Washington, D.C., Maryland, New Jersey, Pennsylvania and West Virginia. Nationally, some 1,664 people are on the waiting list for lungs, with 75,962 on the active list for all organs, according to OPTN figures.

Sarah had been on a pediatric waiting list for 18 months when her parents protested the way lungs for transplant were allocated. A high-profile public relations campaign led to a court order that forced Secretary of Health and Human Services Kathleen Sebelius to direct OPTN to allow Sarah to be considered for the adult list based on the severity of her illness, not her age.

The child received one set of lungs on June 12, but then developed primary graft failure, a severe complication. She received a rare second transplant three days later. Since then, she has had surgery to repair her diaphragm, developed pneumonia in one of the new lungs and had to have a tracheostomy to insert a breathing tube in her throat.

“Sarah is out of surgery and resting comfortably,” Janet Ruddock Murnaghan, Sarah’s mom, wrote on Facebook Friday. “I am relieved that it is over, and it is a joy to see my babies (sic) face again without tape and tubes!”

Sarah’s situation sparked a national debate about organ allocation procedures and prompted OPTN to change policies for children on the transplant waiting list, allowing them to petition to be included on the adult list based on severity of illness.

Some critics said that changing the system was unfair to others on the waiting list, while others said the Murnaghans shouldn’t have waited two weeks to disclose publicly that the child received two transplants.

Still others were far less kind about Sarah and her family, which Smith says she found disturbing.

“I couldn’t understand how people could be so evil,” she said. “I already gave her my blessing to be strong and to continue fighting.”

In order to fight her own battle, Smith needs to travel to the University of Pittsburgh Medical Center to be ready when lungs become available.

“They would really love for me to be in Pittsburgh yesterday,” said Smith, who has been hospitalized five times since January.

She and her husband, Richard Smith, a milk truck driver, are hoping to raise up to $50,000 to help pay travel and living expenses while she waits. Volunteers are holding a “Breath of Life” charity event on July 21 in Cherry Hill, N.J. For details, contact Sandra Domenech at smn73@aol.com

The waiting is hard, says Smith, who uses oxygen piped through a 25-foot hose that she navigates through her house.

“If the call comes, I have to make sure I have the phone in my hand,” she said.

She is continuing to follow Sarah Murnaghan’s progress, hoping for the best for the little girl.

“I heard today they were doing a surgery on her,” she said. “She’s doing well? That’s awesome.”