'I felt like my body was on fire': A TB survivor describes the excruciating pain of the cure

For almost five years, Owais’ world has been restricted to a one-room house in Dharavi, Mumbai’s most famous slum, where he lives with his wife and two kids. A slight man, weakened by HIV and totally drug-resistant tuberculosis, Owais talks about his life and his romance with Mumbai earnestly.

Owais was one of seven children in an farming family from the Benipatti district of Bihar. He was the youngest and everyone’s favourite. His middle brother had migrated to Mumbai and Owais soon joined him, to study there. Unfortunately, they could not afford an English-medium education for him, while Owais had his heart set on it. “I was a fool then,” he says regretfully. "I felt if one didn’t have an education in English it would be pointless. So I didn’t study further. It was a big mistake."

While his brother went back to the village, Owais stayed on in Mumbai. He had fallen in love with the city and what it offered. “There was nothing to go back to in the village,” he says. He trained as a tailor and within a year found a job. “It’s a well-paying profession and I was very good at my job,” he says proudly. In 2003, he married Khursheed, who sits beside him as he narrates his story and corrects him occasionally. They have a boy aged 11 and a girl aged 9, who study at a nearby English-medium school.

In 2005, Owais had severe diarrhoea and was hospitalised. The cause could not be determined until Dr Jagtappa, under whose supervision he was , suggested an HIV test. It came back positive and Owais’s life changed altogether. “I have no idea how I got infected. I never had sex outside marriage and my wife is negative too” he insists. “I recall a doctor in the village used to inject us and didn’t change the injections. Perhaps I got it from there,” he says. Owais flatly denies any unsafe sexual behaviour or hospitalisation, although he admits to regularly getting tested for HIV. It’s unclear why. “I didn’t tell anyone but my wife about my HIV status,” he says, breaking down.

Owais had only begun coping with this change when in 2006 he began coughing. He went to Jagtappa who diagnosed him with drug-sensitive TB, a common infection amongst HIV-positive individuals. In March 2006, he was put on DOTS treatment. Despite counselling, Owais stopped taking the medication after a few months. “ I don’t know what got into me. I got better and I told them I won’t take any more drugs,” he recalls. As an afterthought he says “It was not pleasant going to that Center and waiting to be given your medication”. This is a constant refrain by many TB patients treated in the public sector and exposes how little trust the national TB programme puts in them.

A month later, his health deteriorated and he went back and restarted the TB medication. He recalls that he took category one drugs for almost two years. “I kept asking them if my TB was gone. They would say it’s improving,” he says of the DOTS centre at Sion Hospital, Mumbai.

In 2008, Owais fell sick again with high fever and constant vomiting and was hospitalised. The doctor at the DOTS centre said they could do nothing further for him and referred him to the infamous Sewri TB hospital. Owais panicked and tried desperately to find Jagtappa, who had moved to another practice and could not be reached. Owais then went to Dr Azharuddin a well-regarded doctor in Dharavi. Azharuddin took one, look at his test results and immediately sent him to Zarir Udwadia, India’s leading TB specialist.

After weeks of waiting, when Owais finally got an appointment with Udwadia, his tests revealed MDR TB. Under Udwadia, Owais witnessed substantial improvement: his weight increased, and within eight months he felt much better, “almost normal” he says. He recalls that he was better but his health deteriorated during the holy month of Ramzan, when his food habits led to decreased immunity.

The MDR treatment also affected his work . “I was getting slower” he recalls. His employer knew about his disease and was supportive. “It’s his kindness and the generosity of my brothers that has kept us alive,” says Owais. He had to stop working completely in 2010 because of the toxic side effects of medicines and growing weakness . He and his family have since been supported by his employer and his brothers. His treatment for TB, which was extremely expensive, was supported by the Mumbai charity, the Muslim Ambulance. The medication for HIV came from Medecins Sans Frontiers, Mumbai. “We could not afford to buy any medicines or get tests. I would have been a deadman otherwise,” says Owais pulling out X-rays, prescriptions and test reports crammed in bags detailing the extent of his disease.

The family never spoke to neighbours and friends about TB. Of course, discussing HIV was out of the question. If asked, the couple termed Owais’ poor health or cough as a seasonal allergy. “We had little kids. We didn't want people discriminating against us,” says Owais. His wife, sitting on the floor beside him, nods in agreement.

In 2010, after a few months of good health and reduced medication, Owais fell sick again and this time was diagnosed with extremely drug resistant (XDR) TB and put on category three drugs for treatment. The doctors also determined that part of his lung needed to be removed entirely to save him. The drugs had terrible side effects. “He lost his temper often did not realise what he was doing,” his wife tells me softly. His hearing was also affected briefly. Despite these challenges, Khursheed never considered giving up. “We had small children. It’s not like we had any choice,” she says matter-of-factly.

After the surgery, Owais’ condition improved. “I was almost back to normal, although I was still unable to work,” he recalls. The TB, however, came back. In 2012, multiple tests in revealed that he was resistant to virtually every drug available. The doctors at Hinduja had nothing to give him anymore. “We can’t do anything for you they said to me” he remembers. His case was one among the 16 that were reported as “totally drug resistant “by Hinduja doctors in a journal causing a media storm and a backlash from the Ministry of Health. For some months it seemed that the fight was over for Owais, as he continued his drugs, uncertain how long he would live.

In December 2012, a new TB drug called Bedaquiline was approved by the US FDA for TB treatment. It was given a fast track approval for use in cases of MDR and XDR. Udwadia requested the drug for Owais on compassionate grounds from its manufacturer and he was started on Bedaquiline on 19th February, 2013. This, the doctors told him, was his only hope. The drug had terrible side effects: “I felt like my body was on fire. I would get up in the middle of the night to bathe. Sometimes I couldn’t sleep for days. It was unbearable,” Owais recalls. His temper too took a turn for the worse Khursheed tells me. But, for the first time in eight years, his tests came back negative. In September 2013, he finished the Bedaquiline course and his tests came back completely clean. Despite this, Owais kept taking category three drugs because of the previous reappearance of the disease. In March 2015, he finally stopped TB drugs completely-almost a decade after he began treatment.

Sitting on the floor of his home, Owais tells me that even though he is unable to support his family, he is grateful that he is alive to see his children grow. He breaks down as he recounts details and incidents of kindness, particularly the unstinting support of his family. As our conversation ends, rain begins to fall relentlessly over Dharavi. The family sits together on the floor of their windowless home. The children want to go out and play in the rain but Khursheed stops them. Owais takes his son and daughter to go and sit by the doorway, to watch the the rain envelop Dharavi.

This story is an adapted excerpt from Voices from TB, a collection of TB survivor stories by Chapal Mehra. The author's work was supported by the Lilly MDR TB Partnership.