I was used to treating patients with Tuberculosis (TB) in public hospital settings where I worked as a dietitian. I encouraged patients to eat their food and drink nutritional supplements because I was certain this would help with their recovery.
What I didn’t fully appreciate then is that being sick changes one’s perspective, and not having an appetite really makes daily tasks like eating seem like unfair expectations. I experienced this firsthand when I was diagnosed with TB in 2011 and drug-resistant TB in 2012 – pre-extensively drug resistant (XDR) TB.
For two years I was on over 20 pills per day and an injection every second day. Emotionally and physically I felt like giving up at times. Without the support and love from my family and friends that God put in my life, I would not have survived. I realised the importance of support in the fight against TB.
I was hospitalised for over two months, both from the disease itself and from the side-effects of the medicine, which included constant nausea, vomiting, diarrhea and later liver failure.
The disease and side-effects from the treatment would take me to the edge of death before it was all over. I suffered liver failure and fell into a coma. My doctor phoned my family to come and say their goodbyes. God performed a miracle and I survived. But I was very weak even after being discharged. I could not get out of a bath by myself and it took a long time to recover physically.
Taking the TB treatment was extremely challenging. I used to cry a lot, unlike my usual self. It was overwhelming to realize that the treatment was just beginning and had to be taken for two years.
People were surprised to learn I had TB, almost like I did not fit into their perception of what a patient with the disease should look like. This is not surprising with a disease with so much stigma attached to it.
However, anyone can get TB as the bacteria is spread through the air. TB can affect the lungs, but also other parts of the body like the brain. Not all patients with TB present with symptoms, but often a persistent cough, fever, nights sweats and weight loss are associated with TB. Therefore, people who experience these symptoms should ask to be tested for TB at their local clinic. By taking treatment, the person can protect their household and community, as they will not remain infectious. Family members and children living with a patient with TB are also at risk and should be tested for TB.
Importance of social support
Health systems and communities can provide support to patients who are sick with TB. A social support package including not only practical support such as transport or nutritional support, but also emotional and psychological support, should be prioritised.
In health care facilities, the World Health Organization’s TB infection control measures should be implemented as health care workers are more at risk than the general population to contract TB. Managers in all health facilities and departments should create a culture of adhering to infection control measures. They should lead by example and wear the N-95 respirators, make sure their staff is trained on TB infection control measures and that resources such as the N-95 respirators, are available.
Today, I am fully cured and healthy. I feel free, as if the sun is shining again. I was fortunate to start a new job. Dr Liana Steenkamp, an inspiring researcher, opened a new field of work up to me. I enjoy being able to spend time with my family and friends, work, exercise, and do fun things again.
Fighting TB a “worthy cause”
I am grateful for the chance to turn adversity into an opportunity to make a difference. As an active member of TB Proof, a South African organization involved in TB advocacy I have learned that each person’s story and experience is valuable and that fighting TB is a worthy cause. Through patient and civil society advocacy, TB Proof aims to help address shortcomings in TB prevention and treatment strategies, both for HCWs and the population they serve. My involvement with ACTION, www.Action.org, including my recent media training in Paris, France, has equipped me to be a better advocate on all our behalf. Increased investment in TB research to improve outcomes for those with the disease and to reduce the stigma that prevents too many from seeking treatment is needed.
As a health care professional, I have the opportunity to educate the public about TB and to contribute to the international goals of eliminating the disease in the shortest possible time – by 2030 as set by the World Health Organization.
I am especially passionate about the need for new research that can provide a framework in which community members are actively involved in the research process as partners. The people most affected by the scourge of TB need to be involved with researchers, health workers, leaders in the communities, and politicians who are all working to make a difference.
Patients who have TB endure a lot of suffering and we can all be that person to support, encourage and help them along the path to being cured. I believe social support for patients with TB can make a big difference. Now more than ever, it is important that we all unite to end TB! – Health-e News.
Ingrid Oxley is a research assistant and junior lecturer at the Dietetics Division, Nelson Mandela Metropolitan University in Port Elizabeth.