“I have endured the injections, the pills and the side effects, but how do I prepare my teenage daughter of what may lie ahead for her?” asks T Muan, who has completed 18 months of multidrug-resistant tuberculosis (MDR-TB) treatment.
He was first diagnosed with tuberculosis in 1986 after complaining of fever. He underwent as many as 9 months of treatment and a procedure to remove water from his lungs. In 2011, he started feeling feverish in the evenings and coughed often. He was started on the TB treatment again and because he did not improve, his physician sent him to MSF in Churachandpur (Manipur). A range of tests were conducted subsequently which revealed he had a strain that was resistant to three of the most powerful first-line antibiotics and one drug from the second-line available to fight the disease, or MDR-TB. His youngest daughter, who was not improving following TB treatment, is also suspected to have drug-resistant tuberculosis.
“When I started taking the medicines after doctors confirmed I had MDR-TB, my condition was very serious. I couldn’t eat, drink water, and constantly felt restless,” says the 47-year-old.
He’s seen excruciating days – when the side effects of the medicines left him limp on a cot, when a burning sensation enveloped his body or when he was mentally exhausted to pull forward.
“Swallowing the pills is one thing. Facing the injections is another. It’s very difficult to remain motivated to complete the two-year long treatment,” Muan, who credits his family and MSF staff for keeping him on track, says.
His 15-year-old daughter, who is sitting nearby, keenly looks at him as he mentions her. “She mostly appears to be very tired and lacks strength,” he says with concern.
He brought her to MSF when she started keeping unwell and some other doctors feared that she might have tuberculosis. Her condition is now being monitored by MSF. While she doesn’t like to miss a single day of school, he says, but she may not be able to complete the academic session this year.
His younger brother had also contracted tuberculosis, but the type could not be determined. He took treatment for about 6 months.
“He felt okay for some time, but the symptoms came again. His health worsened soon. Yet when MSF offered to help, he refused treatment. He didn’t see a point in continuing if there was no improvement. He passed away in 2010,” Muan says.
The dedication of the MSF staff, however, made him adhere to the demanding schedule of taking medicines. “Come rain or sunshine, MSF staff come to see if I’m following the treatment. They encourage me. They counsel me on the possible side effects of the medicines, why it’s important to continue and on the steps I should take to prevent the spread of infection.”
“It is arduous, but I know that if you leave the medication, you can lose your life,” Muan, who is expected to finish his treatment this March, says while hoping that the road to recovery is not as difficult for others in the future.
It has now been confirmed that T Muan’s daughter has drug-resistant tuberculosis. She had to leave school and was started on the same regimen as her father. She is doing very well, and has not experienced any side effects so far.
It can take 14,600 pills and countless injections to cure MDR-TB. In Manipur, Doctors Without Borders/Médecins Sans Frontières (MSF) has been providing much-needed healthcare to people with tuberculosis and its severe strains since 2009.
T Muan was interviewed by Avantika Shrivastava and Shagun Nagpal.