Phumeza Tisile’s story: surviving the worst of tuberculosis

Blog 25 Mar 2022
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Phumeza Tisile is a Research Assistant, a project lead and an Advocacy Officer at TB Proof organisation, based in Cape Town, South Africa and Adviser to the LIGHT global health research programme. She has a degree in social sciences and grew up in Khayelitsha outside Cape Town. She is a blogger and likes to travel and climb mountains. Phumeza is also, in her own words a ‘TB person’- more specifically, she is an Extremely Drug Resistant (XDR) TB survivor, and she is advocating for improved diagnosis and treatment of TB. Through a series of blog posts from 2010-2015, Phumeza communicated her lived experience of TB. You can also listen to her tell her story on Series 3, Episode 5 of the Connecting Citizens to Science podcast from the Liverpool School of Tropical Medicine (LSTM).

When Phumeza, as a first-year student at Cape Peninsula University of Technology, visited the doctor in early 2010 she was initially sent away with pain/fever medication and cough syrup. Some of the better-known TB symptoms, such as night sweats and constant coughing were not present, a sputum test came back as negative for TB and the doctors could not provide answers as to why Phumeza was losing weight rapidly and becoming weaker by the day. With rapid PCR diagnosis for TB (GeneXpert) being unavailable in South Africa, the next step was a chest X-ray, and a positive result for TB was a surprise to everyone.

What followed next was a journey of over three years of TB treatment. This began with first line TB treatment, which soon proved to be ineffective. By May 2010, Phumeza had been diagnosed with Drug Resistant (DR) TB, and by that summer the diagnosis was updated to Multi Drug Resistant (MDR) TB. It was found that there was resistance to the second-line treatment Kanamycin injection and Phumeza was advised that she now had Pre-XDR TB- by 2011 this had been amended to XDR-TB. The drugs were not working, and it seemed that this strain of TB was resistant to everything that the doctors could offer.

Between 2010 and 2013, Phumeza endured extreme lows- such as the loss of a close friend at the clinic in 2012, the diagnosis of pneumothorax, infected glands in the lungs, a tumour scare and surgery to remove fluid buildup in her lungs, which caused the breakage of two ribs due to her frailty at the time. Sputum smear test results came back repeatedly showing a positive result for TB. The rarer negative TB results helped to provide some hope, however, there were times throughout Phumeza’s treatment that she was given unimaginably terrifying prognoses. At one point, doctors gave her a 20% chance of survival, at another time they advised her to consult with a priest as it was believed there was no chance of her survival. 

In Phumeza’s blog post from 13th January 2012 she wrote “They say it is not likely to go back to negative culture, only a miracle will happen in this case”. However, in many of her blog posts she demonstrates unbelievable determination “I’ll finish this race! It doesn’t matter how long it will take, the point is the finishing line, that’s all” (post from 13th September 2012). In the end, it was a combination of Linezolid and other drugs which was successful at curing the TB- Phumeza completed treatment in 2013 (after 3 years and 8 months on toxic medication) and celebrated being TB free on 29th August 2013.

Phumeza is full of praise for the Lizo Nobanda clinic in South Africa, where she spent much of her time throughout TB treatment. She credits Médecins Sans Frontières (MSF) and the clinic for her recovery- both in regard to the medicines and the support she received, including encouragement to adhere to the treatment regimen, and light-hearted moments such as an end of year function, with games and food.

However, DR-TB treatment is far from a party. For Phumeza, and many other people affected by TB, the sheer volume of oral drugs and injections, to be taken every day for years, is overwhelming. Phumeza has spoken about how she would have to take 20+ drugs and have 2 injections per day, plus supplements. Ingesting so many pills every day was a challenge- Phumeza has said that she would vomit daily, and still has a strong aversion to yoghurt and juice, which she used to take with the medication. Side effects of the TB medications which she experienced were skin problems, and numbness from the injections as well as other side effects can include blindness, permanent nerve damage, hallucinations, and psychosis. 

In Phumeza’s experience, though, the worst side effect of the TB medication was deafness, which was linked to the Kanamycin injection, early on in her treatment. In October 2010, Phumeza woke up one morning unable to hear- in her blog post from 12th December 2014 she reflects “On the first day I went deaf it sounded as if people were talking from a distance or down a deep hole, but as time went by their voices faded away”. It was a deeply traumatic experience for Phumeza to suddenly lose hearing, particularly as she was not aware of this potential side effect. She was moved to different ward. 

In October 2014, tests confirmed that Phumeza was a good candidate for cochlear implants, to enable her to hear. It was an extremely emotional day when, in March 2015, she had the implants fitted (the internal part of the implant system is surgically implanted inside the cochlear- inner ear- to stimulate the hearing nerve). But it was not an easy road- adjusting to the implant and going through listening training was a challenge. Phumeza crowd-funded her implant surgery, which cost around $40,000 USD, and many people have contacted her since, asking for financial help for the same surgery. Phumeza encourages others to share their own stories to raise money.

However, people affected by TB often do not wish to talk about their experiences- this is largely due to stigma. As a Research Assistant at TB Proof, Phumeza’s research tries to understand the stigma TB patients face- in communities, at home and in healthcare facilities- we need further research on how this affects treatment adherence. There is much to be done to reduce stigma in healthcare centres. Pamplets titled ‘HIV/TB’ communicate the incorrect message that HIV and TB come as a package and that one cannot be diagnosed with one without the other- this then intersects with HIV stigma. Language used should also be considered- healthcare workers often use the phrase ‘TB suspects’.

TB stigma can often be linked with lack of knowledge- Phumeza has said, of TB diagnosis “I thought it only happens to certain people”, but now she emphasises through her work that anyone can get TB. She also tries to spread the word that only medicines prescribed by doctors can cure TB yet there are still many who believe that ‘muthi’ (traditional medicine) or holy water, can be effective.

Phumeza does not know how she caught TB, but she focuses on what needs to be done to improve TB diagnosis and treatment. In early 2013 she co-wrote ‘test me, treat me: a drug-resistant TB manifesto’ and in May 2014 handed it to world health leaders at the World Health Assembly at the United Nations, Geneva. She advocates for shorter treatments, better diagnosis and medication with less side effects. South Africa was one of the first countries to stop using the Kanamycin injection due to voices like Phumeza’s. Much of her research also looks at how TB affects mental health, and how this is linked with substance use.

Phumeza did not receive TB counselling, and believes it should be readily available, combined with full and clear disclosure of potential side effects of medications. She speaks confidently, and with experience, about what needs to be done. TB is the second leading infectious killer in the world - why is there only one TB vaccine available, which is over a century old?

The LIGHT consortium joins with Phumeza in asking for more urgent and more ambitious investments and actions, especially in the context of the COVID-19 pandemic, in the fight against TB. The mission of TB Proof is ‘Combining stories and science to make the world TB Proof’ and Phumeza is an integral part in this. She has said that she won’t stop telling her story until change happens- you can keep up to date with her work via the TB Proof website.