Nokuthula’s Story – Making Our Patients’ Voices Heard

As part of HACT’s commitment to supporting this year’s international World Hospice & Palliative Care Day which takes place on Saturday the 10th October 2020, we are sharing our patients’ stories and making sure the voices of those who are fighting a life-limiting illness are heard. Thank you to our current patient, Nokuthula* for having the courage to share her story with us…

32 year-old, Nokuthula was recently admitted to HACT’s 24-bed Othandweni Respite Unit after she sent a desperate plea for help via our Facebook page. HIV positive and suffering from HPV (Human Papillomavirus) which after several years of going untreated has manifested itself in warts all over her body, Nokuthula was in extreme pain upon admission. “The warts are so bad now, I even have them in my nose which makes breathing very difficult,” explains Nokuthula “I had been trying for so long to get help, but the doors were always closed until I reached out to the AIDS Centre…”

Nokuthula’s medical history and journey to this particular point in her life is a complicated tale, but one that highlights the very real challenges that so many young women across the country face in trying to access healthcare services, particularly those living in underserved communities where daily life can be a real struggle. Her admission to our Respite Unit follows five painful years during which time her health has steadily deteriorated and she has been left weak and bedridden at home in the care of her mother.

Prior to being admitted, Nokuthula lived in Embo with her 52 year-old mother, two younger sisters aged 16 and 19 and her one year-old nephew. There is no one working in her family and they all rely on one meagre child foster grant to survive. “There is never enough to eat in our house” explains Nokuthula “we often go to bed hungry…” As a result, Nokuthula has been unable to take her antiretroviral treatment (ART) properly as taking the medication on an empty stomach often leaves her with severe nausea and dizziness. Consequently, her CD4 count dropped to dangerously low levels, so much so that she was denied treatment for her HPV from several government hospitals as doctors believed she wouldn’t survive the relatively routine procedure of removing them by cauterization. “I gave up hope after my last visit to the hospital” says Nokuthula, “they just told me to go home…”

It’s been 11 long years since Nokuthula first found out she was HIV positive. She was just 21 at the time when a trip to her local clinic changed her life forever. “My friend was pregnant and she had to have a test at the clinic, the nurse said I should have one too…” recalls Nokuthula, “I never expected it to be positive.”

Initially, Nokuthula’s body responded well to ART, she was working as a call centre agent at the time and was able to take her medication on a full stomach. “Things were going well for me,” says Nokuthula “but then in 2012 I ended up in ICU for four weeks after my boyfriend at the time beat me up…” This dark period in Nokuthula’s life, during which she almost died as a result of the severe injuries and internal bleeding she endured, unfortunately resulted in her body becoming resistant to regimen 1. “After that, I had no choice but to start regimen 2” says Noluthula “but by then I’d lost my job and struggled to take it properly…”
After all the trauma she has withstood in her relatively young life, Nokuthula was understandably nervous and very sceptical about being admitted to HACT’s Respite Unit. “I don’t like hospitals” says Nokuthula “but this place is very different, the care is amazing and the nurses are all very friendly. My mother is very worried about me, but I keep telling her I am in good hands now!” Staff at the Centre became aware of her situation after sent a plea to HACT via the organisation’s Facebook page, and a home visit and subsequent admission were promptly arranged.

Nokuthula has a long road to recovery ahead of her, but our team is cautiously optimistic. “Nokuthula is definitely a fighter” says HACT’s Head of Nursing Services, Sister Sphe Gamede “she has been sick for a long time, but we will not let her give up and we will get her well again.”

*Name has been changed to protect our patient’s identity

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HACT is a registered Non Profit and Public Benefit organisation and a proud member of the HPCA (Hospice Palliative Care Association of South Africa)

As with all our projects, our Othandweni Respite Unit is reliant on donations from the public.

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Contact Info

Telephone: +27 31 765 5866

Email: info@hillaids.org.za

Hillcrest AIDS Centre Trust
26 Old Main Road
Hillcrest, Kwa Zulu Natal, 3610