TB chose me as I’m strong enough to fight it: XXDR-TB survivor

Neeta Sawant* who underwent a successful surgery to remove her left lung, tells My Medical Mantra about her six-year fight as she steps into a future brimming with possibilities

TB chose me as I’m strong enough to fight it: XXDR-TB survivor
picture for representational purposes only

In a battle between Neeta Sawant and Extremely-Drug Resistant TB (XXDR-TB), the gritty woman emerged victorious. The 30-year-old, who suffered from tuberculosis (TB) for six years, successfully underwent a surgery to remove her left lung removal at PD Hinduja Hospital, Mumbai, on May 29, 2017.

The young woman went through a trial by fire to see this day. A series of wrong treatments made her condition worse and she developed XXDR-TB. When she was diagnosed with the TB, Neeta was a fresh graduate in architecture from Cummins College, Pune, and had just joined a firm in Ahmedabad. Her failing health came at the cost of her not being able to continue her job. Three years into the treatment, she was administered drugs such as Kanamycin and Capreomycin that led to permanent hearing loss.

Neeta’s parents, who spent around Rs 40 lakh for her treatment, have exhausted of all their savings. Funds for her life-saving surgery were raised through a crowd funding. While the results of TB tests on her were negative in January this year, the lung removal ensured most of the infection is weeded out of her body.

Back in the comforts of her home in Pune, Neeta, in an exclusive interview to My Medical Mantra, reflected on her journey and said the single-most important factor in the path to recovery is to never stop fighting.

My Medical Mantra (MMM): Wrong treatment in the initial days post discovery of the disease affected you badly, especially when you developed resistance to many drugs. Aren’t you angry with the doctors for this? Don’t you think that it was their moral responsibility to refer you to experts rather than conducting trials on you?

Neeta Sawant (NS): When I had just started working as an architect, a client approached me to design a multispecialty hospital. I denied the offer as I had no experience needed for that assignment. I could well have taken up the project and copied designs of other multispecialty hospitals, but I chose not to do that. For me, honesty and professional ethics are most important.

Like I refused the project, the doctors too should not have toyed with my life. But when you rest your faith in the hands of a doctor with the hope that he will ensure you’re healthy again, the thought of questioning him does not really arise. Also, the two doctors, who treated me in the initial period, were highly qualified. They were consulting at major hospitals and were also faculties at medical colleges. Instead of questioning them, we had faith in them. Also, doctors really get offended if you ask them whether you should consult others. Medical business does not guarantee transparency between doctor and patient.

MMM: How did you react when you were first diagnosed with TB?

NS: To be honest, I knew nothing about TB. With whatever energy I had left, I used to switch on my computer and read whatever the Internet had to offer on TB. But it was like reading an unknown script.

In Marathi, TB is called as ‘kshay’, which means end. Why should a disease have such a negative name? Some hundreds of years ago, people died of TB and the name made sense. Now, with the treatments available, TB patients live long and fulfilling lives. It is time to change the name of the disease in Marathi.

MMM: What has been the reaction from your friends, neighbours and relatives when they heard you had TB?

NS: There is a stigma associated with the disease, and so, many chose to no longer stay in touch with me. Many of my friends and relatives did not visit me. Some just enquired over phone. Some regular visitors to our home suddenly stopped visiting us. I was overwhelmed, when my boss came to meet me with his little son. I was also surprised by random donations from people who hated me, from relatives whom I had never met and from absolute strangers.

MMM: What kept you motivated to fight back?

NS: My family. They put in ounce of whatever they had for me. So, at times, when I thought of giving up, I felt I couldn’t leave them. I had to fight for them. They gave me everything. Even my young sister, did so much for me. My father bought the most expensive cochlear implant for me. Their true love for me has been my motivation. I don’t believe in religion, but I believe that there is some power that created me and gave me all the strength to fight back.

MMM: How have you changed from the time you were diagnosed to now?

NS: There were times I used to feel I am unlucky. However, now I feel, though the journey was difficult, TB chose me because I am a strong person and I could fight back. I don’t know from where I got the infection. Anyone can get the infection, regardless of whether you are a commoner or a celebrity. It is no fault of the patient.

MMM: How do you look at yourself 20 years from now?

NS: It’s better to be surprised. I do not want to plan anything. I just want to live life as it comes. I had planned many things when I finished my architecture, but life gave me TB. My friends used to tell me, ‘you are the person who will live life to the fullest.’ Now, even if I live for 50 years, I want to live them like I lived for 100 years.  I don’t want to think about my past. I am a different person now.

MMM: Tell us about the passions that you want to pursue.

NS: I’ve been pursuing dance since I was in Class 3. During Ganesh Chaturthi, I used to choreograph dance shows in our society. I was the one yelling around doing choreography. I want to resume dance. I also want to listen to classic English songs of eighties. Sweet Child O’ Mine, November Rain and Lemon Tree are my all-time favourites. After getting the cochlear implant, I don’t get the exact beats and I might not get them in future, but I will try to go as close as possible to those classic beats so that I can continue feeling them in different ways. I want to watch many English movies. I stopped watching Hindi movies before getting the implant as they don’t have subtitles. Most importantly, I want to continue my work as an architect, which is my passion.

MMM: Do you want to get married?

NS: Right now, no. I don’t want sympathy or empathy from anyone. And now, after this battle, I am capable of living alone. I don’t want to marry for the sake of it. Marriage, for me, is companionship. If I get a companion who understands my complexities, I will certainly marry. But, right now, no.

I do want to adopt a child as I like children, and marriage is not everything. I have friends who were with me when I was at my lowest. I have my family and my passions. I know that they won’t be there throughout my life, but I am ready to live alone.

MMM: What is your advice to TB patients?

NS: Never stop eating. Even after vomiting blood, you should eat something and family members should insist for the same. Never give up on treatment. Even if your family and friends abandon you, get treated. I have seen patients who come to hospitals alone as they did not have any support. Never give up on life.

MMM: How do you look at TB treatment in India?

NS: I just have too many questions. When cancer is given so much of importance, why is TB not? Why is Bedaquiline (a drug to treat active TB) not made available? Why are doctors still not aware about standard protocols and common side effects of TB drugs? Why was health budget reduced this year? What about those TB patients who are shunned in rural areas and slums?

MMM: Apart from your family, who helped you to be positive?

NS: I used to shut myself in a dark room and sleep for 18 hours without eating anything. Mood swings and depression had become common. My skin colour had changed. At one point, I weighed 28 kilos. My nurse was like a mother to me then. She used to cry with me when I used to cry. She used to feed me, bathe me and stayed with my family for two-and-half years. We had to force her to go home at night as she never wanted to leave me alone. Dr Zarir Udwadia, who diagnosed me correctly, offered me correct medicine, and finally cured me, has been a great motivator.

(* We have changed the name of the patient to protect her identity)