It has been almost a year since Robert Alexander Carew, 39, first learned he has idiopathic pulmonary fibrosis, a progressive disease that causes scarring of the lungs and makes it difficult to breathe. Carew first suspected something was wrong when he felt breathless after climbing stairs. "I was very fit. I used to take the stairs two at a time, but started to notice I was out of breath after just a few stairs."
Carew also felt tired and found his usual exercise regime of spinning classes and workouts at the gym increasingly difficult. He made an appointment with his doctor, who ordered a chest x-ray. The results were shocking. The x-ray showed signs of pulmonary fibrosis. "I just slumped down into the chair," recalls Carew. Further tests confirmed the doctor’s suspicions. Carew’s father had been diagnosed with idiopathic pulmonary fibrosis some 20 years before, so Carew had firsthand knowledge of what he was facing.
Despite his sobering diagnosis and the inevitable challenges ahead, Carew maintains a positive outlook. Following his diagnosis, he immediately began doing research to better understand the disease, its causes and his prognosis. Arming himself with information and talking to others with the disease helped him cope. "I’m a proactive person by nature," he explains. Carew is also an active member of an online IPF community where he shares information and offers support to others with chronic lung disease.
"As it turns out I’m not your typical IPF patient. I don’t fit the profile. I’m young, otherwise healthy, and I don’t have any occupational risk factors. It was my genetic link that somehow predisposed me to this disease."
Carew is optimistic about his prognosis. He has explored the possibility of a lung transplant, something that will become more likely as his lung capacity decreases. So far he is tolerating his medications well with minimal side effects and doesn’t have any other health conditions. "Age is definitely on my side," he says.
Carew uses oxygen to complete strenuous activities like chores or exercise. He says he will likely need to use oxygen full-time in a few months as his breathing becomes more difficult. Still, he continues to lead a full and active life that is typical of many men his age. He is busy building his career at a computer software company while juggling the demands of raising two young daughters with his wife.
IPF has taught him to live in the moment. "Life goes on," he says. "It's definitely not good news. But as time goes on you realize it’s not as bad as you think it is."