Never ignore a cough
I’ve always had a cough. I came out 2 months prematurely (hence made it to the 80’s, thank you God!), and proceeded to spend some amount of time inside an incubator. My parents would have held my fingers, guests would have observed from afar. And then legend has it, on the 2nd day, I contracted an infection.
This would stay with me for the rest of my life in the form of a cough, or a cold, always maiming me as sick child who was slow in all developmental aspects for the first years of its life. I would go on to be cautious, skeptical and definitively afraid of a lot of normal things such as ice cream, cold drinks, swimming pools and the rain — more afraid than the usual, average kid.
My parents would take me to a comfortable 12–15 doctors in a span of 15yrs — trying all remedies possible to identify and tackle the stubborn cold. Homeopathy gave me a high rate of tooth decay, allopathy was not sustainable, and Ayurveda back then didn’t get the follow-through it required from a young patient like me.
It’s important to state and acknowledge this because we need to accept that we did our best. We tried our best, with the information we had, to make the best judgment for my health. I was tired, but never my parents who accompanied me for every consultation, X-ray or blood test. Kudos to them and their strength.
To this day, I remember the exact moment in the back of my preschool class when I discovered that not all kids carried cotton handkerchiefs to wipe their noses. That, at the age of 5, I was different.
Decades later, it simply became a normal Aishwarya thing. It was my superpower — producing endless amounts of snot, but having the ability to not pass this on to anyone who played with me or until much later, shared tongue with me. I was a mildly-regularly-sick-regular-person. Kleenex became my best friend.
Decades later
I moved to Delhi, and there I had my first asthma attack in the week leading up to Diwali. I felt like I was choking (which it turns out is a very normal emotion for most people not from Delhi, but living in Delhi). I would go on to have this attack every day after that, until I left the city.
As most concerned people, I went to a renowned pulmonologist located 2hrs away from me. I went to a Celebrity Pulmo (let’s call him CP), who proceeded to test me with 400 different needles for allergies. The whole process took about 4hrs, and was mildly relaxing. Acupuncture is real y’all.
CP diagnosed me with severe asthma and put me on a high dosage of various inhalers for 3 months. As any manchild would do, I didn’t follow through. I told myself I had more pressing matters in life for that moment, and I stopped taking my Asthma medication. I juggled with Allegra and the inhalers at my convenience.
Enough time had passed for the rite of passage to take over and introduce me to my Beloved Partner (let’s call him BP). It was the spring of 2018 and we were both bonding over our shared respiratory conditions. He’d beaten Bronchitis as a child, and he appealed to the imbecile in me to do the same. Lovers find spark over the same cigarette, we shared our inhaler. It was dirty, quite literally.
BP nagged me to go to a pulmo. I went. This time, I went someplace I was comfortable going to regularly, and therefore committing to. If you’re looking at visiting your doctor regularly, it makes a huge difference to have them located at a convenient time and distance — it directly impacts the effort and enthusiasm you’ll put in towards your treatment. Especially if you’re by yourself.
With my medical commute time reduced from 120 minutes to 10mins, and to a hospital I was accustomed to, I found some of my energy back again.
My New Pulmo (let’s call him NP), was diligent. He kept at it, stronger than I did — ordering me through numerous blood tests to identify the type of Asthma. This exploratory testing in itself was significantly more advanced than any other exploration I had ever had. We identified the type, and the medication. I began Nebulizing three times a day — something I would continue until NP would say — something isn’t right.
I had a persistent crackling sound in my chest that no amount of Asthma medication seemed to be able to dilute. The exploration process from hereon could be made into a well-deserved Netflix shortie with my humble fact-concerned NP as the protagonist.
Diagnosis
It was the first time I’d had an HRCT scan. And there I saw it — a little lopsided shaped outline to what should have been a perfectly healthy whole lung. It looked like someone from inside this lung was tugging away at it, at a shape that should have been whole. We made other discoveries as a team.
We’d identified damage to my windpipes which resembled Bronchiectasis, a collapsed piece of lung and other sections resembling the early onset of Bronchiolitis.
Here’s the challenge — this looks bad, it is bad — but doesn’t feel as bad. I couldn’t reconcile the extreme chasm I felt in between how serious this was, and, the fact that right now I was ironically the fittest I’d ever been (had been hitting the gym for half a year at that point). To make it real, NP told me two of the toughest words I’ve ever heard in my life. Permanent. Progressive.
I let this sink in for about a day trying to decide whether I was going to be optimistic about the treatment, realistic about my chances or simply cry myself to sleep. I was also torn between the question of taking this seriously or simply ignoring it. After all, I’d lived with this for decades. Fact is that it’s not life-threatening in itself, and I chose that as my bottomline. The condition increases my risk exponentially to contract infections — which could be life-threatening. The doctor rightly wanted to go inside ASAP and identify the infection that ultimately caused the collapse.
It could take a while, but it helps to mull over your own story, and decide how you want to approach it. It’ll shape the narrative you have with your family, and your inner strength to fight.
I decided it was time to tell the troops. My parents, family (boss & fitness instructor included) and my beloved partner. I told them and then with some encouragement decided to do a Bronchoscopy as soon as possible.
And so there you have it. I’m Aishwarya Tipnis, and I have a permanent and progressive condition called Bronchiectasis. At the time, I also had Invasive Aspergillosis, a form of infection because of the previously mentioned condition. And there was also a partial collapse in one lung, to add to the mix.
My doctor used the term ‘colonization’ when I asked how long I’d had this. The infection had survived long enough to have made a little home in my lungs for colonies, hmm.
First Reactions
I don’t remember what came first, the Bronchiectasis diagnosis or the intriguing Aspergillus announcement. I was quickly prescribed the nebulizer, inhalers, an antifungal called Vorier and daily postural drainage.
The anti-fungal medicine was rare to find and arrived only one day before I was set to leave for the US for a holiday. My holiday suddenly became a much needed ‘lifestyle’ sabbatical. I spent the next ten days absorbing the whirlwind that had been my life for the last month — and I introspected around my appetite for risks related to passive smoking, alcohol, and pollution.
I spent ten days with my partner, each night taking the Vorier and losing sense of direction and time, experiencing severe paranoia and delusions. Until he would hold me and calm me down with our song. I would wake up with very little memory of this time, and with spasms. All listed side-effects, check. Additionally, our man would diligently perform the drainage procedure on me each day and have my back as I threw up all ugly phlegm, every time.
Although my treatment plan has undergone a severe change since I was first diagnosed, I do have to stress on the importance of defining a clear adjustment period. Set a date. Chronic conditions are lifestyle changing. They need you to be kind and strict with yourself at the same time. The best investment I made was to spend the holiday honing in on the change I needed to make in my life. It took me some time to get used to knowing that 60 mins of my already busy day were now dedicated towards my lungs, for the rest of my life. Another 30 mins are yet to be added towards pulmonary rehab / cardio.
Letting it sink
Mentally, it took me some time to come to terms with my health — to accept sickness even when I don’t really feel it. I was the youngest at many hospital wards and often mistaken as family and not the patient during the Bronchoscopies I had. In other cases, I was the oldest patient to have done a Sweat Test for Cystic Fibrosis. Truth be told, I was secretly hoping to find out that this is some stupid mistake — and that I actually just have a regular cold.
Sometimes I don’t think I can do it on my own. Sometimes I feel tired of going to the hospital to pick up my reports by myself. It feels lonely. But then other times I realize that there is still a group of determined people — doctors, family & friends, close to me eager to accompany me in any way possible should I need them.
To be continued.. For now, breathe, cough & spit.
