Priyankka recounts her fathers struggles from diagnosis to living with IPF and COPD. While offering a caregiver's perspective, she also talks about dealing with a lack of awareness of the disease and the important role pulmonary rehab plays in improving a patient's lifestyle.
It was a really long time back. I was probably 15 years old when I realised my father wasn't as strong as I thought he was. They were subtle signs, but they were always there. I would see him get mildly out of breath after climbing a flight of stairs, after our evening walk or after he beat me in a match of table tennis. He would look at my concerned face, brush it off and say look, I'm developing a paunch - your old man's just plain unfit. I,d heave a sigh of relief and think yeah, it's the sedentary lifestyle we lead. He just needs to exercise!
Slowly, as months passed he started to get a little more breathless. It was more pronounced. We decided it was time to see our GP. Our GP suspected it was asthma. Back then, we lived in Chembur in a place which was the heart of pollution. It's just the quality of air here that causes asthma, I would hear people say.
It wasn't until the summer of 2003, when we realised something was amiss. This had to be more than asthma. My sister was getting married and dad was playing the perfect stressed yet excited father. He was running around trying to ensure everything went off smoothly. During the wedding rituals, he developed an uncontrollable bout of cough because of the smoke. My mom, sister and I exchanged worried looks and this time, the alarm bells in our heads started ringing.
Right after the wedding, we forced him to see a chest specialist. Dad underwent a series of tests - X-rays, CT scan, PFT ( pulmonary function test), sputum tests and multiple blood tests. The doctor looked at the reports and announced, this is a case of idiopathic pulmonary fibrosis and mild copd. Worried expressions crossed my parent's faces." Parts of your lungs have become fibrotic and this gradually decreases the ability of your lungs to take oxygen from the atmosphere. You should take care, prevent infections, regularly exercise and monitor your health as this condition has the tendency to get worse with age" the doctor said.
We had been in denial thus far and somehow still continued to be in a bit of denial. We didn't necessarily follow all the rules. Sometimes 6 month check-ups extended to a year and sometimes chest physiotherapy ( twice a day was the order) schedules went for a toss. While dad couldn't exert himself too much and did suffer bouts of infections, he continued to go about work and life as normally as possible for a few years. It wasn't until 2012 that his body started showing signs of deterioration.
It was at this point that we realised the importance of physiotherapy and pulmonary rehabilitation in managing this disease and the sheer importance of having a doctor who is approachable and answers your questions however silly they may sound.
As a caregiver and relative of a pulmonary patient, there are a few lessons I have learnt. If you get out of breath often, don't assume it's just lack of fitness. It's always safer to get tested to prevent future complications or at least address and manage any existing disease.
Secondly, there is a dearth of information and lack of awareness around diseases like ipf in India, but the Internet is a saviour. Yes it does throw up a ton of negative information related to diseases, but it also provides a wealth of information around treatment, cures and most importantly patient stories and experiences. You just need to use it smartly - pick the useful bits and ignore the inconsequential stuff.
Lastly, take your health seriously. If you suffer from IPF, COPD or other pulmonary issues, pulmonary rehab should be a big part of your treatment. It can greatly improve your lifestyle and help you breathe better. It's an investment for the future - FOR YOUR FUTURE!
