By Pat Bond, RN
I was working in a privately-owned dialysis unit when I was diagnosed with tuberculosis (TB) on December 27, 2010. Just like that, my life turned upside down.
I was a registered nurse working full-time up to the day I went for the X-ray on my lunch break, but I was told to leave the unit immediately. The abrupt changes alone were traumatic.
Following the diagnosis, I was referred to a pulmonologist at the nearby UCT ACADEMIC Hospital, who arranged for my admission into isolation. I had sent a sputum sample off, about 10 days prior to the X-ray and would be told, upon admission, that I not only had TB, but it was multi-drug resistant TB (MDR-TB), and I had only a 40 percent chance of survival.
I remember those words so clearly.
I remained in strict isolation for five weeks, with a port inserted for my daily amikacin injections. Also, I had to have regular hearing tests, as the amikacin is known to cause nerve damage in the ears, resulting in deafness. After four months, the injections were discontinued as there was noticeable deterioration in my right ear. They added to the cocktail of drugs I was already taking to replace the amikacin.
My discharge from the hospital should have been reason to hope, but it was another journey down a long dark tunnel as I struggled to cope with the side effects of the drugs: nausea, vomiting, insomnia, and depression. I was prescribed more drugs—sleeping pills this time.
Eating was a big issue, as I had to do my own shopping. I was within walking distance of a small mall where I could buy food, but since I was still considered contagious up to two months after my discharge, I had to do my shopping wearing an N95 respirator, a special close-fitting mask that blocks out 95 percent of test particles.
Fellow shoppers turned their backs or walk away from me, and I lost touch with all my former colleagues except one, who would visit occasionally. I was made to feel that it was all my fault that I had contracted the MDR-TB.
I was re-admitted to hospital several times because of the side effects of the drugs. During one stay, in July 2011, the doctors decided to do a lower lobe resection of my right lung as a way of bypassing some of the drugs, since I was having such a severe reaction to them.
By now, I had lost 8 kilograms (almost 18 pounds) and no longer had the energy to cope with daily tasks, like taking a bath. I remember leaving keys in my pockets whenever I went on the scale because I couldn't face being told I had lost more weight. I thought seriously about ending my life.
Finally, at the end of April 2012, I was told that I was cured of MDR-TB and could stop the treatment. It was the day I had longed for, but suddenly I was scared to stop the medication—just in case there still was a chance of it flaring again.
I have since met other TB and MDR-TB survivors who have shared their experience. I have been amazed at the similarity of all our journeys—both the harrowing treatment and the terrible stigma associated with the disease.
One gentleman related how his friends deserted him—no longer wanting to meet him at the Shebeen for a drink anymore. A medical student told of her family’s complete lack of empathy until she was forced to leave her studies midway and return home. With the support of TB Proof, a nonprofit organization dedicated to educating and creating TB awareness and providing patient support, she was able to pull her life back together and resume and complete her studies.
I have learned many important lessons; what stands out most is not merely the devastating physical effects of TB treatment, but the psychological effects, as well, and how much more that is complicated by the stigma attached to the disease. Because of this, many patients and survivors do not want to talk about their experience. While this is understandable, it makes it very difficult for others, including medical practitioners and policymakers, to know the extent of the problem.
After suffering the loss of my profession and having to live with a weakened immune system, I am committed to being an advocate for TB treatment and eradication. I am imploring our leaders to do the same with strong commitments to the United Nations High-Level Meeting on TB, to be held alongside the General Assembly in New York in September this year. More investment in research is needed to provide better treatment options and diagnostic tools as well as more programs to support patients and survivors.
Unless one has experienced such loss along with the feeling of abandonment and rejection and the dreadful side effects of the drugs, it is very hard to understand.
It is time to end TB.
Pat Bond is a registered nurse who lost her job when she became infected with TB while on the job. She is now a strong advocate for better TB drugs and treatment.