31 Mar 2015
(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?
On the day of the surgery, I was singing before going in to the operation theatre. As I saw it, the surgery was going to end my suffering. If the surgery were a success, I would be cured, and if it failed I would die. In either case, my suffering and that of my family would end. So I was calm and happy. The doctor told my parents that I would be on a ventilator for three days and only after that, would he comment on my chances of survival. However, I was out of the ICU the next day. How did that happen? Perhaps, a miracle, the love of my family, or I wanted to defeat medical science.
Today, people tell me I am a survivor. Well it wasn’t without challenges and doubts. I took treatment for MDR TB for six years in which I had to take about 400 injections and I had to undergo two major surgeries to get my affected lung removed.
Everyday, I had to take upto 15-20 tablets. The medicines had severe side effects that made me suffer. My vision and hearing got affected and I had nausea and joint pains all the time. I was coughing blood almost everyday. The worst side effect was the darkening of my complexion. I stopped looking in the mirror, as I was scared of what I would see.
After my first surgery, when I thought I was well, I joined engineering but unfortunately I had to quit in the first year itself because my health deteriorated. I regret having no career even today.
For patients, it’s important to be positive. Their will power is the only thing that is going to help them fight this disease. Following the doctor’s instructions and taking medicines on time and regularly is critical. Families should support the patient and assure them that they are with them in this fight.
I recently signed a letter to the Prime Minister along with many concerned and well-known citizens requesting him to make TB a national priority. Some key recommendations sent with this letter include -free and accurate diagnosis and treatment for every Indian irrespective of where they seek care, nutritional and economic support for poor patients, large scale awareness campaigns, the need to being new drugs and better surveillance. Most importantly, we have strongly recommended engaging India’s vast private sector where most TB patients continue to seek care. TB cannot be defeated by the government alone-it need all stakeholders to come together.
Hopefully, this letter will get sufficient attention and we can come together to fight and defeat TB.