(Deepti Chavan is an MDR-TB survivor and is now a spokesperson for the rights of TB patients in India.)
I was 16 and appearing for my board exams when I first started feeling sick. The cough would not stop. Initially, I went to our family doctor who prescribed medicines for the cough, which helped. I somehow managed to complete my exams.
Yet, my cough persisted. My doctor advised me to get a chest x-ray. It took me more than a month to get diagnosed with TB. My family could not believe the diagnosis.
Even though my doctor started treatment after diagnosing me with TB, I continued to remain unwell. It was clear that this medication was not helping. We then decided to go to a chest physician for further treatment. Even this did not help and my condition continued to worsen.
After few months my doctor told me my parents that I had a more dangerous form of TB called Multi Drug Resistant -TB and recommended surgery. We were confused and had no clue as to what it meant! So we went to other few chest physicians, each of whom also recommended surgery.
My parents were shocked and were distraught, struggling between grief and helplessness. As for me, I was just 16, so I didn't even realize the severity of the disease. I felt optimistic despite the suffering and thought I would take medicines for a few months and be fine.
While I was diagnosed with TB early, recognizing it was MDR TB took time. My doctor kept on changing medicines but never advised me to get a drug susceptibility test. When he realized his mistake, it was one that cost me dearly.
I resolved to get the surgery since I wanted to get well. During the surgery, the surgeon found out that along with my upper lobe of lung, a little part of my lower lobe was also infected, but he didn't remove it considering my age and vulnerability. Post-surgery in 2000, I had to continue with medicines and injections but my condition deteriorated. We even changed few doctors but with no hope.
I refused to believe that there was no alternative and started surfing the net to find a doctor who could treat me. I found one in the UK. However, it would cost me a fortune to get treated there. Luckily, he suggested a doctor based at the Hinduja Hospital in Mumbai.
After visiting him, for the first time I felt hope creep back into my life. I started treatment under him although my case had become critical. He told us that I would require another surgery but it was quite risky. We started finding a surgeon who could operate on me. We went to a few notable surgeons in Mumbai, they all said that I had just six months to live and I had just one percent chance of survival.
We finally found a surgeon in Mumbai who too felt that I had 1 percent chance and would most likely die on the operating table. He asked if I would still want to get the surgery done? I said yes. I was ready - what's the difference I thought? After all, if one has fought so hard one might as well fight one last time?
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