I survived the most deadly type of TB, but it cost me a lung

“One day in 2012 I started coughing up blood. It was a Monday.

“My doctor sent me to a public clinic where they took my sputum [sputum is another word for phlegm — the mucus that people cough up from the lungs]. I went back on the Friday and they told me I had multidrug-resistant tuberculosis [MDR-TB]. It meant that the usual TB treatment available then [a course of antibiotics for about six months] wouldn’t have worked for me. 

“The doctors and nurses assumed I had had TB before and had stopped taking my medication, and that’s why I got this form of the disease. They blamed me for it. 

“But I have never been on TB medicine before. I had contracted a drug-resistant bug from the start.  

“About three days later, I went back to the clinic to start my treatment. 

“When I saw the doctor, he had to go look at a flip chart behind the door [to see how to treat me]. 

“I was shocked that the chart seemed hidden away. It showed me that the health workers in that clinic didn’t really care to know more about the condition. 

“It was as if they expected people with MDR-TB to die. 

“I had to get an injection of kanamycin [an antibiotic] every day for nearly six months [along with four other drugs, which had to be taken for 18 more months].

“Towards the end of my treatment, the drugs stopped working. The doctors told me I now had extensively drug-resistant TB [also known as XDR-TB], a very serious variant of the disease that wouldn’t respond to even the most powerful TB medication clinics had at the time.  

“They had no idea why this happened. For months I had responded well to the treatment, they said. 

“The only option was to take a drug called linezolid. But it wasn’t widely available in the country at the time and you had to wait for about a month to get it. 

“By the time I got my first dose of this medicine, the TB bacteria had already destroyed my one lung. 

“Fearing that the disease would spread [to other parts of my body], the doctors removed my damaged lung. 

“I was put on a new course of medicines, which included bedaquiline, delamanid and linezolid. Eventually, after four years of TB treatment, I was cured.

“I nearly collapsed when my doctor phoned me with the news, because I had started thinking that I’ll have to take up to 40 tablets every day — like I had done for most of my treatment period — for the rest of my life. 

“I’m afraid of contracting the disease again. I would rather die than to go back on all that medication [even though treatment for MDR-TB is only nine months today].  

“My journey with TB pushed me into activism. Many people still think that it’s only those with HIV who can get TB. 

“But everyone is at risk. As long as you can breathe, you can get TB. As an activist, I believe that we need to change attitudes and educate people on the disease as a community.” 

Though TB is curable, its consequences linger long after treatment for 20%-30% of TB survivors; in poorer countries the number might be even higher. The tentacles of the disease reach beyond just the airways, though — scientists are researching how post-TB lung disease affects other body parts (like joints, muscles and the spine), mental health and patients’ quality of life. 

TB experts and activists from across the world gathered in Stellenbosch from April 17 to 19 to share their experiences, new findings and perspectives on how to tackle what they say is a “global challenge”. 

* Bhekisisa health reporter Nicole Ludolph spoke to some of the TB activists and survivors at the symposium who shared their accounts of fighting the disease and having to live with its fallout. This #SliceofLife piece is the first in a series of their stories.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.