‘This TB has changed my life’, says Thabo Mwale. ‘I cannot even run. I cannot even handle heavy things. I used to play soccer in my school days. Now I can’t play soccer. I used to run. I can’t run. I can’t do anything that is hard. I don’t use my right hand side to sleep. I only use the left-hand side. If I use this part I end up coughing a lot. I even cough out blood. I get tired to sleep on this part. But I can’t change. I’d better wake up and sit. My coughing is not normal like anyone. If I cough, I get pain. I cough a lot. If I’m walking faster, I cough. When I wake up in the morning, I must cough. I’m getting used to it, but it’s painful’, he says, with coughs interrupting his speech.
Mwale, a slightly-built 35 year-old man who lives in Pretoria, was diagnosed with tuberculosis in 1994 at the age of 17 in Mpumalanga. He was treated for TB and he subsequently got cured. But the quality of life that he lives today is a permanent reminder of the illness that he once had. Early on after successfully taking treatment, he learned that the TB germ had killed off one of his lungs.
‘I asked my doctor: ‘Doctor, you say I’m healed, but I’m still coughing’. And he told me: ‘You will always cough for the rest of your life because your left lung has been destroyed by the tuberculosis germ, which means it’s permanently damaged’. I’m surviving with one lung now’, he says.
Mwale’s condition is one extreme example of how damaging TB can be, says Dr Raazik Gani, a pulmonology fellow at the University of the Witwatersrand, in Johannesburg.
‘His disease represents a rarer and more extreme form of what TB can actually do. It is a true warning to what a destructive disease that it can be. Anecdotally, and without numbers that I can give you, more complicated forms of TB, more destructive forms of TB, leaving patients more clinically impaired such as this gentleman, are increasing’.
Dr Gani says nothing can be done to repair Thabo’s lung.
‘The lungs are like candy floss ‘ extremely fine and extremely delicate. They get damaged. Imagine candy-floss out in the rain. It can never be teased back out to the same structure. And when lungs get damaged and get damaged in a bad way ‘ and it’s not only from TB’¦ bad pneumonias of other sorts in people that are pre-disposed to it from this rampant epidemic of smoking and the damage that it causes ‘ the lungs take a heavy brunt of it. In prognosticating him further, he’s got a destroyed lung. Our candy floss is wet in the rain and it’s not going back to what it was. And the focus of the treatment in this gentleman as unfortunate as it is would be in trying to maximise the function that he can achieve and to maintain the highest quality of life. Very little else exists to improve his status of health.
This remains the case even though, clinically, Thabo is cured of TB.
‘By cure, we mean that the patient does not have active tuberculosis. For the most part the disease has been treated but the damage that it has caused remains. The damage can remain permanent and there is no fully restorative recovery to serious lung infections’, Dr Gani says.
He says it for this reason that taking sufficient preventative health measures or adhering to correct treatment of TB is important.
‘If you are diagnosed with TB very early on, with no lung disease at that stage, the majority of patients that take treatment appropriately, are adherent to it, complete the course and follow up will have no significant clinical sequele to it. There will, obviously, be others whose therapy fails either because of failures that they are responsible for, that the health system is responsible for or a certain genetic or environmental pre-disposition. But those aside, the key message should be TB is still treatable, but people need to be adherent and not dismissive of how destructive it is. And this gentleman in particular, shows what a debilitating outcome very bad or poorly managed TB can result in’.
Mwale’s tragic experience emanates from lack of knowledge about TB. When he had the symptoms as a youngster, he didn’t get medical help. Instead, his elders believed that he was bewitched and took him to a sangoma to be cured. As a result, when he found that he had TB, he did not take his medication.
‘I went to the clinic for the TB test, but I didn’t go back to collect my TB results. And then some other people – members of my family – encouraged me to go to the sangomas because they realised I had been (be)witched. So, I didn’t go to collect my TB results. I was getting worse at the sangomas. One of the days I went back to the clinic and collected my results and they told me that I have TB and they gave me the treatment for tuberculosis. But I didn’t take my treatment. I ended up vomiting blood. I end(ed) up not getting well and I end(ed) up not even walking by myself ‘ bed-ridden. I was not even breathing very, very well’ he says as he coughs again.
Mwale was eventually admitted at the SANTA clinic in Barberton, Mpumalanga, where he started treatment and stayed for six months. But it was already too late when he started taking the correct medicines for TB as his left lung was already damaged beyond repair.