Acha (dad) was getting weaker by the day, and a part of me refused to accept it. Five years and six months ago, we sat in a pulmonologist’s waiting room. Our family doctor had referred us after weeks of a persistent dry cough.
After a series of tests, the doctor explained that Acha had idiopathic pulmonary fibrosis (IPF). He explained that the lungs would get scarred, and it was progressive, with no known cure. We left in silence, taking an autorickshaw home. Acha said, “Let’s not tell Amma too many details.” He always shielded her, absorbing every setback himself. Back at home, we had dinner, and everything felt safe. But I spent the next few days endlessly googling the disease, trying to grasp what lay ahead.
The word “idiopathic” means unknown. While there are a list of probable causes, we do not know what actually caused the disease. Acha had never smoked, his job did not expose him to harmful substances, and there was no family history. Despite extensive research, the exact cause of IPF remains a mystery. It is more common in older adults, particularly those above 60, and slightly more prevalent in males.
Over time, breathing becomes harder. Doctors often find that the lungs cannot expand well and do not function properly. Early diagnosis is crucial for better management, because the disease can progress quickly, especially in later stages. Doctors often diagnose IPF by reviewing the patient’s medical history, conducting imaging tests, and ruling out other diseases. Sometimes, a small sample of lung tissue (biopsy) is needed for confirmation. Imaging tests, like CT scans, typically show a specific pattern of scarring in the outer parts and bottom areas of the lungs, aiding in diagnosis. If there is still uncertainty, a lung biopsy can confirm IPF.
IPF may start with a dry, unrelenting cough or episodes of breathlessness during activities that usually do not cause such symptoms. IPF is hard to tell apart from other lung diseases, because it shares many of the same signs. It may take time to get the right diagnosis.
Tests that help diagnose IPF
Pulmonary function tests:
They measure lung capacity and airflow, and determine how much air goes into and out of your lungs, how much of it goes to your blood, and how well your lungs work.
Chest X-ray or CT scan:
Imaging studies provide detailed views of lung scarring and help differentiate IPF from other lung conditions.
Bronchoscopy:
This minimally invasive procedure allows doctors to examine the airways and collect samples for analysis.
Lung biopsy:
In some cases, a small tissue sample is obtained for microscopic examination to confirm fibrosis and rule out other diseases.
Early diagnosis can be challenging as symptoms overlap with those of other respiratory conditions, such as asthma.
Treatment includes anti-fibrotic drugs such as Pirfenidone and Nintedanib (to slow the disease’s progression), proton pump inhibitors (stomach acid blockers), oxygen therapy if needed, and in severe cases, a lung transplant. Lung transplantation can indeed be life-saving, but it comes with its own set of challenges. Pulmonary rehabilitation may help improve the quality of life to a great extent. It includes exercise training, breathing exercises, nutritional counselling―all in a structured way.
It is not easy to be a caregiver when you have an IPF patient at home. You see the quality of life getting impacted and activity levels going down. Acha’s willpower was strong; he had frequent bouts of cough, and taking cough syrups meant being drowsy, so he took them only when necessary. He continued to be as active as he could be; he enjoyed walking, travelling, and most importantly, reading books.
If I close my eyes and try to picture him, it is always a scene of him sitting relaxed, lost in a book, or at a bookstore picking out his next read. Throughout my growing years, I watched as books piled up, one after another, filling our modest home. No matter how small our house was, books always found their place, as if they were a part of the very fabric of our lives. The books he edited and authored line our home library, each one a proud reflection of his literary legacy. I take great pride in them, knowing they represent his intellect and creative spirit, and will continue to inspire generations to come.
Today, the thousands of books in his personal collection at home span a vast range―from science and philosophy to history, nature, space and countless biographies. It is a testament to how varied his interests were, and his unrelenting curiosity to seek knowledge in every field. Each book reflects a different facet of his mind, a reminder of his endless pursuit of learning and his deep desire to understand the world in all its complexity.
During his final days, his love for reading slowly faded. I began reading aloud to him, sitting by his side, but his eyes were mostly closed, and I could not tell if he was truly listening.
Just a few days earlier, while he was still in hospital, he had asked me to order The Golden Road by William Dalrymple, so he could read it once he was home. It was a funny moment because he told me not to tell Amma, lest she scold him for yet another book purchase. I ordered another book, A Wonderland of Words by Shashi Tharoor, a book he had mentioned earlier. When I handed it to him, he merely glanced at the cover before handing it back. Again, I tried reading out a chapter for him to listen to. It felt like the last thread of hope―hoping that perhaps his love for books could still reach him, even in those moments.
Acha passed away on January 30, and as per his last wishes, his body was donated to a medical college to support education and research.