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Lisa O'Donnell, 35, a mother and paralegal, awaits the beeper signal that will lead to the double lung transplant she needs to stay alive.
By MAUREEN BYRNE AHERN
© St. Petersburg Times, published April 24, 2002
SEMINOLE -- She waits for the beep.
When the black pager she wears goes off, Lisa O'Donnell must leave for Gainesville. She'll have only 20 minutes to get ready for the drive to Shands Hospital at the University of Florida in Gainesville for a double lung transplant.
And if the pager beeps and she's not wearing it?
"Then guess what? No lungs for me," says Mrs. O'Donnell, who believes a sense of humor helps when dealing with death.
From her appearance, it's hard to imagine the 35-year-old woman is fighting a life-threatening illness. Her trim body looks healthy. Shoulder-length brown hair frames her pretty face.
But simple tasks like walking from her car to her office take her breath away.
An extremely rare disease called diffuse pulmonary lymphangio matosis is destroying her lungs. She was diagnosed with the illness in 1994. Doctors told her last August the disease was progressing quickly and a transplant is her only hope. They told her she would need the operation within 18 months.
So she waits.
In 1993, Lisa O'Donnell had everything going for her: a baby boy, a loving husband and a good job.
But she didn't feel well and she was always tired. She figured the exhaustion went along with being a new mother.
While on a cruise to the Bahamas later that year, Mrs. O'Donnell developed a bad cough that wouldn't go away. Then a chest infection plagued her.
"It just went on and on," she recalled Tuesday. "It never cleared up."
Doctors didn't know what was wrong with her. They ordered all types of tests, including a biopsy. Still, they had no answer.
She continued to have pain in her chest and she had trouble breathing. "I just knew something was wrong," she said.
It wasn't until a CT lung scan showed a growth in the center of her chest that doctors realized the severity of Mrs. O'Donnell's condition. They told her she needed surgery.
She sought a second opinion from Dr. David Solomon, a pulmonologist at the University of South Florida College of Medicine and Tampa General Hospital. He agreed.
During the April 28, 1994, operation, doctors took tissue samples and released fluid trapped in her lungs. Solomon sent the test results to the Mayo Clinic in Rochester, Minn., where a pathologist finally diagnosed Mrs. O'Donnell's illness. The doctor said her diagnosis was one of 12 documented cases in English-speaking countries.
The disease causes the lymphatic vessels in the lungs to multiply, eventually strangling the rest of the lungs, said Solomon, who has been her doctor since 1994. "Ultimately, it will cut off her air," he said.
On the one hand, she was thrilled to finally know what was wrong with her. But on the other hand, she was scared.
With no cure, it was only a matter of time before her lungs wouldn't work anymore. She knew she might not see her son grow up.
Her father had died when she was 7. She doesn't want her 10-year-old son, Joseph, or "JoJo," to experience the same loss she did as a child.
"He's the reason it's hard, and he's the reason it's doable," she said of her plight.
Even with her illness, Mrs. O'Donnell continues to live as normal a life as possible.
She lives in the same home in Seminole where she was raised. After they married, she and her husband, Al O'Donnell, bought the three-bedroom house from her parents. She redecorated the house, filling it with soothing pastel colors.
She works 30 hours a week at the Legal Center in Seminole, where she has been a paralegal since 1988. She drives to Tampa every Monday night for a four-hour class at National-Louis University campus, where she is enrolled in an accelerated program for a bachelor's degree in management. She watches her son play soccer and football.
"I just don't let her get down," said Al O'Donnell, 37. "She is a strong person. I try to keep her going because it would probably kill her just sitting around home."
Mrs. O'Donnell says her doctors tell her they are amazed her illness hasn't slowed her down. There are the sleepless nights and bouts of depression, but she believes her positive attitude is the reason she's been able to live with the disease for so long.
And her faith in God.
"I just have to look for the positive," she said. "Look how lucky I am. I'm going to get the gift of life."
Others are not so fortunate.
According to the National Transplant Assistance Fund, every 14 minutes a new patient is added to the organ transplant list and every day 16 patients die while waiting for a transplant. About 80,000 Americans are waiting for a transplant.
This week is Organ Donor Awareness Week.
Established in 1983 to educate and assist people involved with organ, tissue and bone marrow transplantation, the NTAF also serves as a trustee for funds established for patients.
Mrs. O'Donnell's boss, Kent Davis, contacted the organization and established a fund for her. He has asked for financial support for Mrs. O'Donnell through word of mouth and formal letters to longtime clients. He displays literature on organ donations on a small table in the lobby of the law office. Mrs. O'Donnell has insurance, but other expenses not covered can run from $10,000 to $20,000 for the first year after the operation. She says she doesn't feel comfortable with the fundraising aspect of having a transplant, but realizes it's necessary.
She says she has work to do when she gets better.
"When I think about 'Why me?' maybe I'm the person who is supposed to raise awareness about organ donation," she said.