When 19-year-old Phumeza Tisile was diagnosed with MDR-TB (multi-drug resistant TB) in 2010 she was devastated at first. With the help of doctors, she was put onto the correct medication and learnt that the disease was manageable.
But then something frightening happened: Phumeza began to lose her hearing. Ultimately the TB medication was life-saving but it had traumatic side effects. She lost her hearing completely.
At that time Phumeza was a first-year student at the Cape Peninsula University of Technology. She didn’t feel well, and after losing weight dramatically she made an appointment to see a private doctor.
She didn’t display any of the common TB symptoms like coughing or sweating. The doctor tested for a number of diseases, except TB.
When her results came back negative, the doctor told her to go to a public clinic as he did not check for TB.
“I went to the clinic where I was asked to cough out sputum,” says Phumeza. “But when the results came back there were no signs of TB. After weeks of still not feeling better, I went for an X-ray. The X-ray picked up TB in my lungs. I didn't know anyone who had TB. I was told I could have caught it anywhere – on the bus or at school.”
“Initially I was diagnosed with ‘normal’ TB but when I didn’t respond to the medication after about four weeks, doctors realised it was MDR-TB.”
The medication was toxic and four months into MDR-TB treatment, Phumeza’s hearing was affected.
“At first I didn’t notice anything,” she says. “It happened suddenly. I woke up and I was deaf. Obviously I was confused because I couldn’t hear anything. I went into the bathroom and turned on the tap... there was no sound of running water and at first I just thought maybe something was blocking my ears.”
But Phumeza was in store for more bad news. In addition to losing her hearing, she was told her strain of TB was no longer MDR but pre-XDR (extensively drug-resistant TB).
“I was discharged as I was getting better, only to be told I have XDR-TB.”
‘I continued treatment’
Stopping treatment was not an option for Phumeza.
“It was either dead or deaf; I was already deaf so I had nothing to lose. I continued my treatment. They stopped the injection because I was resistant to it but I continued with the rest of the treatment,” she says.
“Losing my hearing was incredibly difficult; I had to adjust to the world of deafness. People that I used to talk to didn't know how to communicate with me. It was understandable because it just happened overnight. I had to take it one day at a time. There was no way I could accept deafness fully; I just learned to live with it.”
As well as losing her hearing, Phumeza also had surgery to remove TB from her lung. By 2011, treatment still wasn’t working. She met Dr Jennifer Hughes, a TB doctor from Doctors Without Borders, who created a new treatment plan using linezolid. This drug wasn’t developed to treat TB; it is used as an antibiotic to fight bacteria instead.
In 2013, after three years and eight months, Phumeza finally won her battle against XDR-TB.
Phumeza speaking at the Union for Lung health conference in Liverpool. (Photo: Marcus Rose)
Learning to cope with deafness
“I never really managed; I just adjusted and hoped for the impossible! I hoped that one day I would wake up and discover that this is all just a terrible dream. But it wasn’t a dream, it was real.
“I’ve made friends with people who also went deaf due to treatment and almost all of them were suicidal. At the time I told them they should focus on being cured first and find ways of adjusting to a new life.”
Getting a second chance
“I had numerous appointments at Tygerberg and with an ENT surgeon at Kingsbury hospital. It took months and I went for what seemed liked endless appointments at the time.
“Cochlear implants are expensive. My medical aid was willing to pay for one. I had to crowdfund for the second one. Two cochlear implants cost R500 000. Financially, you can’t do it alone.
“It is like I have my life back, with better understanding of the world this time around. I’m now studying at University of Cape Town. Things can only get better from now on.”
Today Phumeza is an advocacy officer at TB Proof. She travels to national and international TB workshops where she shares her story.
“TB is curable, but sadly the side effects of TB medication have devastating life-changing results. It is better to let patients know what to expect on TB medication, rather than them unexpectedly waking up deaf.”