Yesterday was a big day for me. I had to go for more tests to see whether the medication is working. If my tests come back clear I can lower my dosage. These tests are also the tests that will confirm whether I have MDR TB or not. Luckily I already tested myself for that in the beginning of this journey and it came back negative. I am lucky, I just have normal TB and treatment can go on as normal.
I have to confess, I do struggle. I am still sick although I feel hundred times better. My lifestyle had to be adapted according to my illness. But what is really bad, is the side effects. The sisters at the clinic prepare you for the side effects. There is absolutely nothing you can do. They can hospitalize you, but there they can’t change your treatment. My most recent side effect that is really bothersome, is a rash across my body and face. It itches and burns. This is one of the less common side effects which meant I had to consult a doctor.
Yesterday, after all my tests, I went to a doctor. My own one was not available and I ended up going to someone else. Ok, so this is why I want to write this post today. TB is not a common disease among the private sector and because the private sector doesn’t treat TB, the Doctors really don’t know how the treatment works.I don’t blame them. He stayed on the other side of the room, looked at me and ask if I can’t stop the medication. My jaw dropped and that is when I realized, people really do not know. I was appalled and felt helpless. I think he could see on my very red and soar face that I am not happy so he picked up the phone and phoned a professor to help him with me. Then he asked me for my side effects paper that comes along with the medication. Out loud he read through all the side effects until he came to the section that says less common side effects and my rash was described there. He then proceeded to write a prescription.
Let me explain:
There is only one type of medication that can fight TB. All other antibiotics won’t kill TB. You have to go on this treatment ONLY.They call this first line treatment. The world changed completely in 1930 when a vaccine was discovered to combat TB. At one stage the medici believed that TB is an ancient disease due to the low numbers of people who got it. The vaccine worked! Until 1980 when HIV started to spread. Due to the attack on our immune systems because of HIV, TB started up again and by force. Due to not truly understanding the nature of this disease, treatment was not as strict as today. Then something else happened. TB became resistant against the ONLY drugs that can kill TB.
Problem? Yes. Why? Because TB is a airborne disease that affects anyone. It is not like HIV where you have to have physical contact for you to get it. That is why I was on this wild goose chase to find out where I got this TB from.
How did this happen?
Let me explain treatment:
I am on a 6 month treatment. I have to take my pills ( 7 of them as big as my thumb nail) every day,exactly on the same time. If I skip my meds for only a day, the nature of TB changes and become resistant, causing it to become Multi Drug resistant TB. This means my treatment doesn’t work for me anymore. Which means I am going to die. No fun. What makes it worse is I become contagious again and if I breathe on you, you get MDR TB. Not normal TB but MDR TB. This also means that without treatment, you are going to die and with MDR TB, first line drugs don’t work. In South Africa MDR TB numbers are growing fast. No longer can they say it is due to TB patients that stopped using their drugs. MDR TB has become a illness on its own and it spreads exactly the same way as TB. Airborne. So now we have a deadly airborne disease in our midst.
One of our medical students contracted MDR TB through a patient while she still studied. Her name is Dalene von Delft. She needed to be treated with what they call second line treatment. It was not working and eventually, she found a drug internationally that can be used for treatment against MDR TB. BUT. Chance on survival is 40% and one side effect is deafness. Treatment is for 2 years and it cost R600 a day. You do the math.
Again, if your treatment on MDR TB doesn’t work you have now contracted a disease that they call XMDR TB. Extreme Multi drug TB. What this means is that there is no known cure for you and like both TB and MDR TB, it spreads exactly the same way. Airborne.In 2006, South Africa had their first XMDR TB breakout.
This is the reason why treatment is so incredibly strict. I have to check into the clinic every week, they come and search for me if I don’t. I have to have someone who I am accountable to that will check if I do drink my pills everyday. My dear hubby is that lucky winner. Just think how many times did you not finish your antibiotics that the doctor prescribed for you. You only had to take it for let’s say, ten days. After 5 days, you felt better, and you started to forget to take them. It is exactly the same with TB. But instead of 2 weeks max, I am on 6 months of taking pills. And I definitely cannot forget to take them, does not matter how great I feel.
Last bit of bad news: South Africa has one of the highest numbers of TB, and as I already mentioned, MDR TB. We are in the middle of an epidemic. Just on Friday I heard of two instances in my town where a whole work place had to be tested for TB due to workers who contracted the disease and was like me, wrongly diagnosed. One of them was a creche full of little children. In 9 months of being sick, I could have infected 15 people. I don’t know who they are, because it is airborne sickness. I cant see who breathes in my germs, because I coughed everywhere. I hate this feeling, because I would never wish anyone this kind of sickness.
Lastly, children. I was vaccinated against TB when I was born. It did keep me safe as a child against TB as I was growing up. At this moment they are developing a new vaccine, because it looks like the original one wears off over time. Now, a lot of people argue then what is the point of exposing my baby to a vaccine if it doesn’t work? I said, it looks like it wears off and you don’t know when. Your child can be exposed to TB at the young age of two . The vaccine can do it’s work and your child can be kept safe against this deadly disease. But, if your child is not protected, you are exposing your kid to a horrible disease and treatment. I struggle with treatment and I am grown woman of 30 years old. How will you be able to explain to your two year old what is happening to her due to treatment because she got TB from her teacher? To make matters worse, it can be MDR TB that is becoming more and more common in South Africa. I know there is a study that shows that the TB vaccine causes TB. If that was the case, then believe me, the world health organisation (WHO) would have banished the vaccine immediately. We are experiencing an epidemic. Huge amounts of money are being used to research and prevent this disease from spreading. We need to trust the people who knows. You would like to be trusted in your line of work? Whether it is a full time mom or a accountant? Then why not trust the scientists desperately trying to find a cure? Stop googling and rather go and ask the professionals.
Some good news: TB is everywhere now but you can protect yourself. If you cough for longer than a week, go to the doctor and ask for a TB test. If he asks you if you experience the symptoms then answer truthfully, but still insist for a TB test. If the doctors doesn’t see it fit, go to the clinic. They don’t ask questions, if you walk in coughing, the angel sisters ask you to spit even before they ask you your name. You know your body. In all my doctor appointments prior to be being correctly diagnosed, I had a sneaky feeling that I have TB. I never experienced a cough like this before and I didn’t struggle with my lungs before. I did the wrong thing and googled my symptoms which added to me taking time to diagnose the TB. Be persistent. You only have one health.
Secondly, eat healthy and exercise. Did you know that God put a healer in your body? Your immune system has the ability to fight even cancer. It can definitely prevent you from contracting TB. I eat so healthy now because I can get TB again and there is no way I will. So away with all the unhealthy food and in with the greens and veggies. My husband just had a panic attack. 😉 I go for a walk daily with my pups and hubby. Just boost those immune systems!
Lastly, cough etiquette. If you do have a cough, be kind to your neighbour and put your hand before your mouth when you cough! And then dear ones, wash your hands!
Final thought. If you know of someone who has TB and they are already on their treatment, give them a hug. It is really not easy. They might look fine, but we get tired very often. Our bodies are fighting a huge disease. We might be cranky and we sleep a lot. Mostly, we need love and patience. I am fortunate,I work for myself and my whole world hands out love as if it is on special at Pick and Pay. I am truly blessed. I can just imagine how someone must feel, being on this treatment and having a full time job.I did however inform them that I am not dangerous anymore.. just to put them at ease.
Thank you for taking the time to read through my TB post!
ps I am doing well! hopefully, I can change my meds soon!