‘This Disease Completely Changed My Life, Robbed Me Of My Job, My Future And My Partner’

Posted on March 12, 2016 in No More TB

Submitted anonymously:

man silhouette
Representation only. Source: Flickr

I was working as an IT professional in a reputed multi-national company in Mumbai since 2012. Just like any Mumbaikar, I was working day and night and dreaming of a better future ahead. I was working in rotating shifts while being alone and away from my home, having to take care of everything by myself. I worked all the different shifts, sometimes morning, sometimes afternoon and sometimes even the night shift. The random sleeping patterns and eating habits brought down my immune system to a very low level.

I still remember the day, i.e. the night of the 4th of January 2014; I was in Lonavala with my cousin and I caught a cold that night and I started coughing from that day onwards. I came back to Mumbai and kept on coughing more and more with each passing day, but ignored it as a normal cough.

I continued with my office and worked in the typical shifts. After a few weeks, I started to have mild fevers every day. My cough worsened, and I would wake up at night coughing endlessly. Again I took it lightly and began to take over-the-counter drugs, all the while not seeing a doctor. Unfortunately, the fever came back every day and I started feeling extremely weak as the days went on.

It came to such a point that I went to a private practitioner and he asked me to do a chest x-ray and AFB smear test. After seeing my x-ray and smear report he told me that I have Tuberculosis and need to be put on the first line of medication for a duration of 6 months.

Despite starting the medication, my condition did not improve. After seeing no improvement in my condition, the doctor asked me to go for a drug sensitivity test. My sputum sample was sent to the Dr. Hinduja Hospital in Mumbai. The culture report takes two months to come. Meanwhile, my condition was not improving much and I still had fever sometimes. After the drug sensitivity report came in, I was told by my doctor that the drugs I was taking for the cure are not working on me, meaning that I have Multi-Drug Resistant Tuberculosis (MDR-TB). Now, my treatment went from being 6 months to a minimum time of 2 years in order to achieve complete cure.

I decided to receive treatment through the government programme for Tuberculosis i.e. Directly Observed Therapy, Short-course (DOTS). I began taking medicines from the local DOTS center near my home in Mumbai as I could not afford the costly drugs for the treatment of MDR-TB. I had to take a handful of pills daily and an injection with severe side effects. These included, but were not limited to nausea, psychosis, irritable bowels, headache and dizziness. This became too much, so I finally decided to go back to my hometown and continue with the medication as it was getting impossible to live alone in Mumbai while on these heavy medicines. I felt a sense of hopelessness and isolation.

It’s been 10 months since I started with the treatment. After receiving injections for 6 months daily, I am finally done with the regimen. As far as the medicines, I never miss a dose even though so many times I wanted to because of the side effects of the medicines.

The disease has completely changed my life and robbed me of my job, my future and my partner. She left me because she felt that I did not have a future as I am unemployed and unable to take care of my daily needs. I still have another 14 months of the treatment left. I dream and wish every night for a cure and cry sometimes for my love as she was my life, and I had expected much more from her.

My family is supporting me a lot in adhering to the treatment and taking care of all my nutritional needs. Additionally, they are giving me mental strength as well to fight against this disease which is very important. I dream every night of a healthy future where I start working and support my family financially.

Today, I feel much better than the day I started taking the medicines, but I strongly advocate the need for better research on MDR-TB drugs as the medicines are so toxic and lengthy that a person is completely exhausted with the treatment financially as well as mentally. I am committed to fighting and eradicating this deadly disease. I would like you all to dream with me for a future without Tuberculosis and a shorter regimen for its cure.