"I'm not even the same person," said Smith, who is married and has two adult sons.
On July 21, P.J. Whelihan's Pub in Cherry Hill is hosting a fund-raiser to help offset some of the costs incurred as a result of her health problems. "Breath of Life" will be held from 2 to 6 p.m., and admission is $20, with part of the proceeds go to help Smith.
After her diagnosis in 1996, she had to quit her job in circulation at the Burlington County Times, and now has to depend on friends and family to help her get through each day.
"I live in a bubble most of the time," she said. "I have to rely on other people."
The disorder has kept her from family functions and church, forcing her to watch services online.
"It's been hell," said Smith, adding that her husband of 13 years, Richard, helps her around the house.
The cost of a double-lung transplant on average is about $800,000, which includes the first 100 days of post-transplant treatment but does not include the lifetime of treatment that follows, said Emily Joyner of the National Foundation of Transplants (NFT).
"Some of our patients are taking 30 pills a day," Joyner said.
NFT assists patients like Smith with fund-raising, Joyner said.
Smith has been on the transplant list for two years waiting for a donor. Only one hospital - University of Pittsburgh Medical Center Presbyterian - agreed to take her because she is labeled "high-risk," Smith said.
If a donor is found, Smith will be contacted and at a moment's notice must call Angel Flight, a nonprofit that arranges free air transport, to fly her to Pittsburgh within the four-hour window when the lungs are viable.
After the transplant, she has to spend two to three months near Pittsburgh and use a feeding tube because of damage to her esophagus due to the illness. The cost of lodging can vary, Joyner said, but is high.
"No matter what the price is, it adds up quickly," Joyner said.
Despite the hardship the disease had caused her and her family, Smith has her bags packed and is ready for the moment her time comes for a transplant.
"The doctors have told me that I'm only going to survive if I get lungs at this point," she said.
Contact Sean Carlin at 856-779-3237, email@example.com, or follow on Twitter @SeanCarlin84.