Busi Beko stretches her hand out in a greeting and smiles a broad, easy grin, offering no clue to the hell that has marked her life over the past two years.
Beko’s battle to overcome multi-drug resistant (MDR) TB is a story of survival despite a health system that had let her down on so many fronts.
It is a tale of a mother’s dogged determination to keep her unborn baby despite alternative views from a doctor, and of someone living with undiagnosed TB for so long that she almost died.
Two years ago, Beko suspected she was pregnant with her second child. She immediately visited the clinic in Gordons Bay, a coastal suburb outside Cape Town, to confirm her hunch.
‘The sister was insistent on a pap smear and an HIV test. I agreed, but I said I wanted the pregnancy test as well.’
A month later Beko had some of the results. The pap smear was normal but she was HIV positive. There was no reference made to a possible pregnancy.
Desperate, Beko paid for a home pregnancy test at the pharmacy. ‘I was so stressed when I realised I was pregnant,’ she recalls.
Soon afterwards, Beko began losing weight. ‘I was coughing, my chest was sore. I went back to the clinic. They tried to take a sputum test, but I couldn’t ‘ the pain was too much and they sent me home with some antibiotics.’
Days later Beko went back to the doctor. ‘I said: ‘Oh, my doctor, I think I have TB, please help me. Please help me. I am five months from delivering my baby.’’
Her pleas fell on deaf ears. A visit to a private doctor resulted in a prescription for cough mixture, despite Beko’s HIV status and classic TB symptoms.
Beko returned to the government clinic: ‘I was begging. I told them I was dying. I was so weak, I couldn’t eat.’
The heavily pregnant woman signed an indemnity for x-rays to be taken in the hope of confirming a TB diagnosis in the absence of sputum.
She was sent to Somerset hospital for x-rays only to be turned back to the clinic with two empty bottles and orders to produce sputum.
A few drops of sputum confirmed Beko’s suspicions that she had TB and the clinic immediately started her on treatment.
Beko started using antiretrovirals soon afterwards in an attempt to halt her rapidly deteriorating condition.
At the antenatal clinic a young doctor shocked by the young woman’s weak condition, tried to talk her into an abortion.
‘I remember, she said: ‘Yo sisi, you are very sick. I can try to arrange for an abortion for you,’’ recalls Beko.
A few months later Beko gave birth to a little Othandwayo, only to be informed a day later that the little one’s arm had been broken ‘during the delivery’.
‘You know what makes me seriously mad ‘ that I had to go back and forth to Karl Bremmer Hospital and they never said sorry or offered to pay for the taxi,’ says 33-year-old Beko.
Six months after starting her TB treatment, Beko was told that that she had not converted – meaning the TB was persistent and still in her body – a sure sign that she was resistant to the drugs.
The news put Beko on a roller coaster ride of pain, emotional upheaval and survival against all odds.
In line with the policy of the Western Cape health department, Beko needed to be admitted to Brooklyn Chest Hospital for her MDR TB treatment.
However, the hospital rejected her because she had a newborn baby. Much to-ing and fro-ing resulted, as the hospital tried to decide what to do, leading to Beko being on no treatment for her drug resistant condition. It is during this time that Beko believes Othandwayo was infected with the same strain.
Finally, a doctor working for Medicins sans Frontieres in Khayelitsha started treating Beko for MDR TB at a community clinic. This meant that she had to report to the clinic on a daily basis for 10 tablets and painful injections. The tablets lasted for 18 months and the injections for three months.
‘Yo, you would vomit so much and the pain from the injections. They are very, very, very sore. You couldn’t sit after a while,’ says Beko.
Shortly after being informed that the baby had also contracted MDR TB, Beko was told that the infant had to be admitted to Brooklyn but that she would not be able to accompany her.
‘I was crying so much. I told them that if they had not taken so long to decide what to do with me, my baby would not have been infected.’
In this time, Beko was admitted to Brooklyn only to be discharged a few days later as the hospital realised she was at the end of the intensive phase of her treatment.
A few days before her first birthday, the little girl was discharged from Brooklyn. Her last day of treatment will be on November 13, a date Beko is planning to celebrate, but also remember with a lot of anger.
Her relief is clear as she speaks about both of them being cured. Beko, who is now an ‘ambassador’ at the Ubuntu Clinic at Site B in Khayelitsha, where she motivates and inspires other MDR patients, recalls the pain and nausea that comes with the archaic treatment.
How does the treatment compare to antiretrovirals? She lets out a giggle: ‘Eish, ARVs are easy, easy, easy.’
Beko also has no fond memories of her stay in Brooklyn.
‘People are dying and very sick. The whole day you just sit, you just talk ‘ blah, blah, blah.’
However, the bad memories had not stopped her from going back to the institution to motivate patients. This is despite the risk to her as a person living with HIV.
‘I understand I can be re-infected, but I take precautions. We meet outside and I wear a mask when we go inside. I need to go, I don’t want them to feel ignored or that they are in jail.’
‘They are far away from home and all the time they see people dying in front of them, this is why many abscond. They must be thinking ‘ ‘Oh my God, maybe I am next.’ ‘ Health-e News Service