TB & Me: "I am living proof that TB can be beaten"

25 July 2017

In 2001 I was diagnosed with TB. I remember having symptoms of TB; coughing for more than two weeks, in my case I was coughing up blood, loss of appetite, loss of weight, lot of sweating at night. I remember one morning I woke up wet from the sweat: it was as if somebody had poured a bucket of water over me. 
 
I visited the clinic, the doctors ran some tests. I was told to go back for the results after two weeks. I went back and got the positive results for TB.
 
The normal treatment of TB takes six months only. I was put on normal TB medication for six months. I completed my course, but I was as sick as ever, I was even accused of not taking my medication properly, until my mother proved that I was taking my medication on a daily basis.
 

Portrait of Nandi, who wears a blue top and smiles broadly

 
The doctors concluded that I had another type of TB: Multiple Drug Resistant TB. The doctors explained that my body was resistant to the normal TB medication and that was the reason why the normal treatment did not work. My body was not responding to medication. I was changed to another treatment, which was to be for eighteen months. I was emotionally and physically drained, thinking about the six months of agony that I went through, swallowing useless medication on a daily basis. That was ultimately to be twenty-four months of tablets on a daily basis including the right medication that I received later.
 
In October 2001 I was admitted to Brooklyn Chest Hospital and immediately started with the “proper” medication. The MDR-TB treatment consisted of a couple of tablets and an injection, daily.

From October 2001 to March 2002 I was fighting the TB battle

I remember I was still in grade eleven at the time of leaving school. I started showing symptoms of TB. Before the results came, my mother and I were called by my High School Principal, Mrs Watts. We were due for September recess in the year 2001. The school principal told my mother that my health was deteriorating and that I should get some rest over recess, and come back only when I was feeling better. That was my last day at school. 
 
When recess was over I was still not well, instead I was worse; I knew then that I was not going back to school. I never wrote the final exams and I never saw the doors of Good Hope Seminary High School again. That was the end of my high school years.
 
From October 2001 to March 2002 I was fighting the TB battle at Brooklyn Chest Hospital in Milnerton. I was treated with MDR TB medication which included a daily dose of Kanamycin injection. The injection which lead to permanent loss of my hearing.
 
It started with what they call “tinnitus”, some funny sounds in your ears like sea waves or sounds like the ones you will hear when going for hearing tests at the audiology.

My health improved tremendously when I was with my family

Then I noticed that when people talked to me they sounded like they were in a hole. 
 
When I realised that my hearing was decreasing I approached the doctor of my ward and raised the issue with her. She asked me to let them try the injection for one more week, like it was nothing. That week was my fateful week. That was the week my hearing went down completely.
 
When I went for speech therapy and hearing tests, the UCT audiology students explained to me how I lost my hearing and what would be the way forward.
 
I was told that the hair around my cochlear was damaged by the injection and that was the reason why I could not hear like before. I was told that it was a permanent and irreversible condition. When my mother visited it was explained to her too. As a parent she was devastated, especially taking into consideration that she had big dreams for me. 
 
I went for speech and hearing therapy at Groote Schuur Hospital where I was provided with a hearing aid which of course did not give me that much sound up to now.
 
In March 2002 I was discharged from Brooklyn Chest Hospital to complete the medication from outside. From 2002 to 2003 I was taking MDR-TB tablets only on a daily basis. I stopped the injection while I was still at the hospital. I was getting better, my health improved tremendously when I was with my family. At the same time I was continuing with therapy at Groote Schuur Hospital.
Besides the hearing loss I am living proof that TB can be beaten
Later a senior audiologist at Tygerberg Hospital contacted me. She ran some hearing tests on me including MRI, CT scans and so forth. She certified that I qualify for a cochlear implant but would need funding as it is a very expensive operation, at that time costing about R200 000, and that would ultimately bring my hearing back. 
 
From then I saw no hope of a cochlear implant. I decided to go back to school using the hearing aid. I carried on with my studies. I completed grade 12 then after went on to varsity using the hearing aid. It was a very tough journey but with God I pulled through. I got my National Diploma but somehow I’m finding it difficult to secure a permanent job where I can save for the cochlear implant. In all the studying and everything I was hoping to secure a job and fund my cochlear to live a complete life. Possibly study further.
Do not allow TB to beat you. You are stronger than TB
Besides the hearing loss I am living proof that TB can be beaten. I have never been sick again since completing my treatment. Millions out there are suffering the same illness. I want to tell you now that you can beat it. Do not allow TB to beat you. You are stronger than TB.
 
I am hoping that another type of TB injection besides Kanamycin can be found to cure MDR TB as this type of injection has ruined many lives out there. I hope to God something can be done about it. 
 
Unfortunately, I am one of those affected by the Kanamycin injection. One day my six-year-old boy asked me “Mom, why can’t you hear properly?” Funny enough I haven’t come up with an answer to that question. He asked me that about a year ago and it’s still lingering in my thoughts. Hopefully one day I will be able to give him an answer.