Love, Longing & TB: Why the Disease Was Tough but Not a Full Stop
“If fighting MDR TB was hard, the stigma made it harder,” a MDR-TB survivor shares his story of battling the disease
This is a story about love longing and TB. It all started in December 2014. Life was going as per plan. I had just qualified for CSIR NET, with a fantastic rank. I was certain of a bright and exciting future. As I finished lunch that day and went to the washroom, I noticed some dark spots on my tongue. When I rinsed my mouth and spat the water out – it was red. I ignored it. It happened again, a couple of days later, while I brushed my teeth. This time, I got really scared. Next evening, I had a spurt of cough and spat out blood again.
Meanwhile, life moved on, unhindered. Within 15 days, I rook admission to IIT Kharagpur. My cough, however, persisted. My colleagues and lab-mates knew something was off. They repeatedly asked me why I looked sick.
The Delay in Diagnosis
I had a great excuse – I was working so hard. But I knew, that something was not right. I was always breathless, but I kept ignoring it. I didn’t want to believe that I had anything, leave alone TB. But within 6-7 weeks, the TB bacteria dashed my optimism.
I started to feel chilly, in the middle of a hot summer. When my exams were about to start, I fell ill with high fever. On the last day of my exam, I finally visited an in-house hospital. There, the physician gave me medicines for my fever and cough and asked me to report after two days with a chest X-Ray and other tests. When I revisited the hospital, my medication was changed. I was unsure about my treatment so I came back home and visited a local private doctor. He changed my medicines again. Yet, no one suspected TB.
Meanwhile, my seniors suggested that I come back only when I was fully cured. So I came back home again. This time I consulted with my family physician who had treated my mother. My physician seemed worried and immediately referred me to a chest specialist. I was finally diagnosed with TB. And just like that, I began my first line treatment.
Coping with TB
TB isn’t easy but its curable. Yet no one tells you of the tremendous side effects. My cough intensified, and I vomited everyday. There was a lot of dizziness to deal with. Meanwhile, I continued to teach chemistry tuitions, at home.
I shared the bed with my father, (lying in opposite directions) and eating with others – just because no information was given to me about the Dos and Don’ts.
I remained at home and spent days reading Harry Potter and listening to music. Loneliness, exclusion and imagination became my new friends.
Life became all about managing the treatment. I visited the DOTS centre every alternate day. In those days, the patient had to visit the centre to consume medicines under supervision – unlike today. Yet, my condition deteriorated day by day. Vomiting became frequent and I was losing appetite not to mention the patience. In June 2015, as my first line treatment ended, I was hopeful that I wold be cured and free to return to academic life in Kharagpur.
But it wasn’t to be. The reports came in and the diagnosed was – Multi-Drug Resistant TB (MDR TB), which meant that I had a more dangerous form of TB and needed to be treated for two more years. I was heartbroken though determined. I was referred to a government hospital for a new line of treatment.
The Treacherous Road to Recovery from MDR-TB
If fighting MDR TB was hard, the stigma made it harder, although I experienced very little of it. The doctor wouldn’t enter my room and was even sarcastic in his remarks. He kept saying that I had only 10 percent chance of survival. The hospital itself looked like an unkempt forest. The putrid smell of the washroom and no drinking water. I had to leave the hospital within 5 days. Whatever happened to those who could not?
As part of the MDR-TB treatment regimen, I was prescribed a series of injections. On the day, I took the first I couldn’t raise my hand beyond the shoulder level. It was that painful. I could not sit properly, because after first two days, I had to take all the injection on my buttock. I used to be heavily drugged throughout the day. I was gearing to bear the pain when the injections went out of stock. I had to buy the injections, commercially. The costs made it difficult but so did the anxiety of missing treatment.
I also had more severe side effects. My ears were getting dry, my taste buds got funny, my eyesight and handwriting went haywire. My hair started thinning and I was starving.
I used to have mood swings too. I couldn’t manage to take all 13 tablets together. I used to stagger my medication, over two hours.
Eventually the treatment worked. I began seeing a gradual increase in my weight – from 54 Kg to 60 kg. It was finally in December 2015, one whole year after the initial diagnosis that my tests became TB negative.
Finally, I was infection free. I went for a haircut, to celebrate my new life.
Of Renewed Beginnings
I met an uncle, whose 17-year-old daughter, had similarly contracted MDR-TB due to poor and incomplete treatment in a private hospital. I realised that I was not alone. I was quite fortunate to be here, alive.
In January 2016, I tried to resume my education but due to issues with treatment and other challenges I had to resign from IIT Kharagpur. So, I began teaching again. I renewed some old relationships. I forgave a few and sought forgiveness.
I also met an amazing woman and fell in love. I started to value life over material things. And I realised how fortunate I was to be here, alive.
Yet the opportunity to complete my education as well as the financial loss was irreparable. But the beauty of life lies in the fact that it so uncertain, isn’t it? TB taught me so much. I have found beauty in the imperfections and have learnt to welcome the imperfections. I believe, TB left me saner, wiser and better. With love and with hope.
(Diptendu Bhattcharya is a TB Champion with Survivors Against TB. An MDR TB Survivor, he trained as a scientist, and he is now a teacher, traveller and lover of music, art and writing. He lives and works in Kolkata.)
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