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Beating the odds

Fighting cystic fibrosis, local woman now in need of double lung transplant

Sentinel photo by KIERNAN SCHALK
Shannon Lower sits with her cat ‘Tiger’ at her home in Lewistown.

LEWISTOWN — “The doctors told us she wouldn’t live past elementary school,” Brenda Lower said of her daughter, Shannon, who has cystic fibrosis.

“But they were wrong,” she added with a thankful smile.

Shannon is now 40 years old and needs a double lung transplant.

Cystic fibrosis is the most common fatal genetic disease of children and young adults.  It primarily impacts the lungs and digestive systems through the excretion of a thick mucus that can clog the pancreatic ducts and wreak havoc in the lungs by causing frequent infections. Today the average life span is 38 years, but when Shannon was born, most children weren’t expected to live more than 10 years.

“Shannon did pretty well for a long time,” Brenda said, adding that her daughter graduated from Lewistown Area High School in 1995, got a degree from Penn College, and worked as a pharmacy tech for several years. She also bought her own home in 2005.

With declining health due to severe lung disease, Shannon had to quit working and began nebulizer treatments three times daily, continuous oxygen, frequent IV antibiotics, and the use of a Bilevel Positive Airway Pressure machine to sleep at night.

Lung transplants are an option for many people with CF in the end stages, and Shannon was placed on the double lung transplant list through the University of Pittsburgh Medical Center  on Dec. 19.

“We got the call to go to Pittsburgh for the transplant on Wednesday, Dec. 28,” Brenda said. “They told us to be there by 2:30 p.m., but there was a wreck in one of the tunnels and we didn’t get there until 3:35 p.m.”

Transplant centers call the family as soon as they know lungs might be available, and they like to have the patient arrive within four hours because harvested lungs are only viable for transplant for six to eight hours.

“My husband, Don, and I got no sleep that night,” Brenda said. “They started getting Shannon ready for surgery.” But, when the donor lungs arrived at the hospital, the doctors noted that one of the lungs was filled with pneumonia and couldn’t be used.

“We were all upset about it but the doctors were fantastic,” Brenda said. “They told Shannon that they were rooting for her and they hoped to get a good set of lungs for her.”

Consequently, the Lowers returned to Lewistown to wait for another call for lungs.  Nationally, the average length of waiting time is about 18 months, but the Lowers are hopeful that the next call will come sooner.

It’s estimated that the Lowers will need about $30,000 to $40,000 to cover the uninsured costs of Shannon’s transplant. Those costs include a caregiver/transportation provider to stay within two hours of the transplant center for two to three months unless an acceptable alternative is agreed upon. The out-of-pocket expenses will include lodging, meals and travel.

Pennsylvania Cystic Fibrosis Inc., an independent, nonprofit, all volunteer  organization that provides services and supports for Pennsylvania citizens affected by CF and also funds CF research, has already donated $1,000 to the Lower Transplant Fund.

The group is encouraging other organizations, businesses and individuals to give whatever amount they’re able to donate. Donors may make a check out to Lower Transplant Fund and mail to: Lower Transplant Fund, c/o First National Bank of PA, 32 E. Market St., Lewistown, PA 17044.

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