I was 16 appearing for my board exams when I first started feeling sick. The cough would not stop despite the medicines. I somehow completed my exams. Soon after my doctor advised me to get a chest x-ray and I was diagnosed with TB.

The initial medication was not helping. We then decided to go to a chest physician but it 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 (MDR) TB and recommended surgery. My parents were confused, shocked and distraught, struggling between grief and helplessness. As for me, I was just 16 so I didn’t even realize the severity of the disease.

While I was diagnosed with TB early, recognizing it as MDR TB took time. My doctor kept on changing medicines but never advised me to get drug susceptibility test– a mistake that cost me dearly. I resolved to get the surgery done. Post-surgery in 2000, I had to continue with medicines and injections but my condition deteriorated. We even changed a few doctors but with no hope.

Doctors told me my case was gone. I refused to believe that there was no alternative and started surfing the net to find a doctor. I found one in the UK. Luckily, for me, he suggested a doctor based in Hinduja Hospital in Mumbai.

I went to Dr. Zarir Udwadia at Hinduja and 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, most of who refused. We finally found a surgeon in Mumbai who 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. After all if one has fought so hard, one might as well fight one last chance.

On the day of the surgery, I was singing before going to the operation theatre. If the surgery were a success I would be cured and if it failed I would die. In either case this suffering would end. The doctor told my parents that I would be on ventilator for 3 days. However, I was out of the ICU the next day. How did that happen? Perhaps, a miracle, the love of family, or I wanted to defeat medical science.

I am a survivor. 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.

Every day I had to take up to 15-20 tablets. The medicines had severe side effects that made me suffer. I had to quit studying. I regret having no career even today. Yet I consider myself fortunate that I had family and friends who were supportive and loving.

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 bring new drugs and better surveillance. We have strongly recommended engaging India’s vast private sector, there are already experiments underway in Mumbai showing how we can come together to defeat TB. Will those in power listen? Hopefully, another Deepti will not have to tell her story.

(This article was originally published in the IMPF Newsletter, Monsoon Session Issue: July-Aug 2015)

 

-Deepti Chavan

(Deepti Chavan is an MDR-TB survivor, and is a patient rights advocate in Mumbai)