A resident of Mumbai, I was diagnosed with Multi Drug-Resistant Tuberculosis (MDR-TB) when I was 16-years-old. MDR-TB is a strain of the disease which is not treatable by the Directly Observed Treatment Short-course (DOTS) of TB medication. While the biggest worry for others my age was scoring high marks in the 10th standard board exams, there I was, battling for my life. Upon receiving the first diagnosis, I read extensively about this form of TB and consequently discovered that the incidence of MDR-TB in India has increased approximately 16 times from 2011 to 2014.
If a TB patient receives accurate and timely diagnosis, and adheres to the treatment, then the condition is treatable. Resistance to TB drugs develops when the medication is either not prescribed properly or when patients stop taking their medicines before the disease has been fully treated. The most commonly used TB medicines are ineffective on an MDR-TB patient, making the treatment difficult as well as costly.
When I was diagnosed with MDR-TB, my X-ray test from a general practitioner showed that the upper lobe of my right lung had already decayed. At that stage, surgery was my only option. During the surgery, the doctors discovered that even the lower lobe in the same lung was slightly decayed, but they decided not to operate on that part. I thought that the success of the surgery had put me on the road to recovery, but some years later, my doctors discovered that the decay had progressed further across my lungs.
I received MDR-TB medication for over 6 years. During this time, I was given over 400 injections. Many specialists felt that a second surgery would be devastating for me. One doctor declared that I would die on the operating table and therefore refused to operate on me. Another specialist told me upfront that the second surgery entailed a 1% chance of survival.
Treatments are both a financial and an emotional burden. Not being diagnosed correctly and on time causes a tremendous amount of suffering, not only to the patients but also to their families. When I was undergoing the second surgery, my family was extremely worried because I had low chances of survival. The damage from the decay of my lungs had spread to my stomach. I was fortunate that my outcome fell in that 1% and I survived. There are many who are not so blessed.
This entire experience helped me learn the importance of treatment adherence, without which one’s condition worsens to a dangerous drug-resistant form. My father was debating between agreeing to let me undergo treatment or giving up on the treatment to let me spend at least 6 months with my family. I had never seen my family so distraught. I urge everyone to not underestimate the agony that treatment for drug resistant TB can cause to patients.
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