'Not a Death Sentence': A Conversation with a TB Survivor

 {Photo credit: Deus Lukoye/MSH.}Abraham Luutu after TB treatment.Photo credit: Deus Lukoye/MSH.

Tuberculosis (TB) is curable when detected and treated. But many people do not know they have TB. And patients who are diagnosed, often experience debilitating side effects from the medicine (such as nausea and loss of appetite) that lead to malnutrition, poor treatment adherence, and prolonged illness.

Each year about 8.6 million people get sick with TB. Twenty-two countries account for nearly 80 percent of all TB cases. In Uganda, one of the 22 TB high burden countries, over 40,000 individuals are diagnosed with TB each year.

MSH spoke with Abraham Luutu, a 33-year-old TB survivor from Kampala city, Uganda. Mr. Luutu completed TB treatment at a clinic with staff trained by Uganda's National Tuberculosis and Leprosy Control Program – TRACK Tuberculosis Activity (TRACK TB). Funded by PEPFAR and USAID and led by MSH with partners, TRACK TB works to increase TB case detection and treatment success rates to reduce the country’s burden of TB, multidrug resistant TB (MDR-TB), and TB/HIV co-infection.

Thank you, Abraham, for speaking with us about your experience as a tuberculosis (TB) survivor. When did you first find out you had TB?

I developed a cough in October of 2012 that lasted over six weeks. At first I tried various over-the-counter medicines, but nothing cured the cough. At the time, I was a smoker and believed that smoking had caused my cough. When I began coughing up blood, I became frightened. I sought treatment from a local physician, who advised me to stop smoking and prescribed a syrup medication. But, even this professional help did not cure me.

Eventually, I went to the Nsambya Medical Clinic where the staff took an x-ray of my chest. They referred me to the Mulago National Referral Hospital, where my TB was diagnosed.

Did you start right away on TB treatment?

No, the news was hard to take. At first, I went into denial and refused to begin treatment. I felt empty and became depressed. I knew the illness was severe and people in my community would shun me if they knew I had TB.

Noticing my distress, the nurses and a community supervisor from Mulago Hospital  began to counsel and reassure me. These staff had received psychosocial support training, and more recently, had been trained to manage patients with TB by the USAID-funded TRACK TB project, led by MSH. The counseling was effective. Within a few weeks, I agreed to quit smoking and initiate TB treatment.

Many patients find TB treatment challenging, particularly the side-effects from the medicine. What was it like for you?

To help me adhere to the treatment, TRACK TB assigned me a community supporter. TRACK TB had trained this person to visit me at home and call me each week to ensure I took all my medicine on time.

The first two months of treatment were difficult: I had to take over 20 large pills every day and they had terrible side effects—nausea, vomiting, loss of appetite, and excruciating joint pain.

Seeing how thin I had become, my colleagues believed I had HIV and were scared to interact with me. My friends also looked at me suspiciously and avoided me.

So how did you manage to adhere to the treatment?

Despite these challenges, I was relieved to see that my body was responding to the TB treatment. Every time the nurses tested my sputum, the results improved. This encouraged me to stay on treatment.

After eight long months, I was finally declared cured.

As a survivor of TB, what advice would you give to others?

I am grateful for the support I received from the nurses and counselors at the health facility and the TRACK TB community supervisor. This team helped me to accept my condition and adhere to my treatment, which eventually cured me completely.   

I now encourage others to seek early treatment if they develop a persistent cough. I remind them that TB is not a death sentence, but if treated correctly, TB can be cured.

I am also eager to encourage the Ugandan and global health community to develop cheaper TB drugs that can work quickly and have fewer painful side effects, so TB patients stay on treatment and infection rates drop. Improved medicine and faster, more affordable diagnostics will help TB patients obtain the care they need and control the TB epidemic for years to come.

Learn more about TRACK TB