How One Woman with Pulmonary Fibrosis Battled Back
Advocacy At age 41, a diagnosis with no cure took over her life. Studying as much as she could, she built her own support network — and found her voice.
Imagine that for three years you’re breathless. You’re coughing, and your chest feels tight. You’re misdiagnosed with asthma, allergies, bronchitis or all three. Your doctor finally sends you to a pulmonologist — a lung disease specialist — who tells you that you need a lung biopsy.
This is a true story for many patients with pulmonary fibrosis (PF).
Dot Delarosa of San Antonio, Texas was diagnosed with idiopathic pulmonary fibrosis (IPF), an interstitial lung disease, in 2008. She was a 41-year-old minister and had never heard of IPF or PF.
IPF is a progressive lung disease that causes scar tissue in the lungs. This makes the lungs smaller and unable to get oxygen into the blood. Patients develop shortness of breath, cough and difficultly exercising. There is no identifiable cause and no known cure.
From bad to worse
“Everything that could go wrong — did,” Delarosa says. Her lung collapsed twice. She underwent a thoracotomy, a procedure to repair an air leak so her chest tubes could be removed. Delarosa was in the hospital for three weeks.
“I was in a wheelchair and on oxygen 24/7,” she recalls. “I was dying.”
Despite her poor health, Delarosa organized the San Antonio Pulmonary Fibrosis (SAPF) support group. Dr. Anoop M. Nambiar, an academic pulmonologist, IPF expert and the founding director of the University of Texas Health Science Center at San Antonio ILD Program, heard about the support group. He offered to help.
'“I was in a wheelchair and on oxygen 24/7 … I was dying.”'
“Dot selflessly devotes her energy and time to not only help educate,” explains Dr. Nambiar. “But also to emotionally support patients and their families.”
Thanks in part to the SAPF support group, the UT Health San Antonio ILD program was selected to join the PFF Care Center Network, a growing group of medical centers with expertise in accurately diagnosing and treating people with PF. Because delayed diagnosis and misdiagnosis are common for PF patients, Delarosa and Nambiar also created the SAPF Free Clinic to help patients receive an expert second opinion. The free ILD clinic — for interstitial lung disease — is the only one of its kind in the world.
“In addition to testing a patient’s lung function with breathing and walking tests from students at UT Health San Antonio’s Respiratory Care Department, I personally review each patient’s history and CT chest scans with them,” says Nambiar. “I then provide advice about additional diagnostic testing and treatment recommendations to the patients, their families and their doctors.”
A new chapter for Dot
Eighteen months after her diagnosis, Delarosa received a life-saving lung transplant.
“Today, I’m full of energy,” she beams. “I play tennis and walk 5Ks.” Delarosa’s devotion to helping others continues as a result. Last year, she became the first volunteer for the University Transplant Center. She also serves as an ambassador for pulmonary fibrosis — and will turn 50 this year.
“It’s been a journey,” she says. “I celebrate every day.”