It´s Monday the 13th July and I am here at the Green House Clinic to take my medication. It is a bit cold because it is our cold and rainy season. I have been taking my extensively drug resistant tuberculosis (XDR-TB) drugs for a long time and though I see it has been long, I have seen great improvements and there is hope to get better.
Dan, one of John´s favorite care-givers, prepares John for his medication.
Since the last time I wrote, a lot of things have changed, especially on my end. One thing that has really changed and I am happy about is the fact that I no longer have to get the daily dose of injections. I completed this part of the treatment in June and ever since, my body has improved. I feel much better; I even feel I am fully treated.
The injections were very painful and the side effects ranged from feeling extremely cold to feeling much sicker. As for my son, John, he is about to complete his treatment, he looks healthy and has now started school at Top Ten academy and additionally he is walking like any other normal kid because when he was really sick, he could not walk or even stand without support.
John, my little helper, who is so much stronger now.
And now, I am able to be in a patient support group as a mentor to other multidrug-resistant (MDR-TB) patients. I encourage them to take medications and when they see my status and how healthy I look, they often get encouraged to complete their medication. Some are ever surprised and in doubt of my sickness especially owing to my good health and good spirit.
My story resonates with the patients when I share my story of how I got infected from the time I was wrongly diagnosed for TB instead of MDR and later to learn that I had XDR-TB. I encourage them and add that TB has a cure if only we can all adhere to treatment to completion despite the long length of treatment. I enjoy giving these encouragement talks, I feel good in my heart when someone else gets encouraged and I think this contributes to my healing process too.
I have spoken to many patients; there was one particular woman who could not believe there is a cure for MDR-TB for a period of two years! And she could not believe the fact that one has to come personally to the clinic themselves to swallow the drugs for that long period. In addition, she could not believe the length of the injection.
Many patients want to know how to balance their normal lives and the everyday life of dealing with the treatment and coping with the side effects of the treatment - so I share my story. I share it because I once also believed MDR-TB has no cure and that I had got it through witchcraft - not until I got tested, counselled and encouraged on that it can be treated.
One woman had refused to take her medication until I spoke to her about my experience and she is now doing well. Initially, I could not tell anyone I had TB, but now I have become a champion to inform people about infection control.
For example if am on a matatu*, I will ask the one a sited with to open the windows and if they insist it is cold, I take the time to explain my condition and the importance of having air circulation - of which they always oblige.
Me and John at the clinic.
My son, now three and half years old, has greatly improved too with time. Before he was initiated to the treatment, his legs almost appeared cross-legged and he could not stand straight. He could not walk much and now I see him walk, run, play, jump and his speech, which was less developed at his age - no one, could hear what he was saying, but his talk has now positively developed.
He can now tell you a story, he can take himself to the toilet, he now acts like other normal children and this gives me so much joy.
matatu* public buses