Do you ever hear people telling you a story about tragedy, and you think to yourself, ”well, that’ll never happen to me…” I remember when my dad told me about his cousin drowning whilst white-water rafting, and i thought to myself, ”i’m a strong swimmer, if i were in that situation i’d be fine…” Well he was a strong swimmer too, and he died. I think we all feel like Hercules, until we’re reminded how fragile we are.
Receiving the incorrect treatment for TB
Where do i start… wow…. 2015 was a very difficult year and i haven’t really spoken about it till now. My father was also sick, he had clots on his lungs, and then i was diagnosed with TB. This isn’t a rant (even if it seems that way in some parts) I really just want to create awareness about TB, just so anyone who needs to read this story knows they’re not alone, and it could possibly help diagnose people sooner if you know what questions to ask at the beginning of the whole process.
So lets start from the beginning shall we… I remember sitting in my car one day (2014), i was in the parking lot at my current employer at the time. I was texting my brother saying that i have this weird cough, but its just sitting in my throat, and i distinctly remember telling him that it’s not flu. It was just a niggling phlegm type cough, but it attacked my voice-box, because i’d always have to clear my throat before speaking to someone, as the phlegm would arrest my voice. It was very embarrassing and annoying having to constantly clear my throat all the time, i felt like people around me were starting to notice it happening more and more frequently. I think in about April 2014, i went to see my GP, explaining the cough to him. He told me i had asthma and gave me an inhaler (bronchodilator), but also sent me to get a chest x-ray. The x-ray was 100% clear.
I used this inhaler for a while, but the cough persisted (it hadn’t gotten worse at this stage yet). So, i decided to visit another GP down the road for a second opinion (July 2014). I remember the conversation i had with him. I simply told him, ”i’ve been coughing for months.” He sat back in his chair and looked up from my file and he repeated, ”for months?” So he told me to get an x-ray of my chest, and if there was any abnormality they’d ask for a sputum sample. The x-ray was 100% clear, and he told me i had asthma, and gave me two more inhalers.
October 2014: at this time i had been unemployed for about 4 months and my final exams were the following month. This is when the disease started getting worse (gradually at first). We had a fire braai/barbecue the one day, and the next day i felt like i could hardly breathe. I knew i was sensitive to smoke, as i’ve felt similar discomfort after being around my friends who smoke, but this was way worse. I returned to my original GP, and after looking in my throat his words were, ”wow, you’ve got a very nasty pharyngitis.” He gave me antibiotics to treat the infection – and this is exactly why the TB disease got exponentially worse from here. If you give someone the wrong antibiotics when they have TB, it just antagonises the disease and makes it more immune to treatment. So these incorrect antibiotics were basically feeding the TB and making it stronger within me (little did i know).
Fantastic, i wrote my final exams in November 2014 and i passed, woohoo! But wow, we arrived in December of 2014, and my brother had just left for a week-long holiday in New York. The coughing was just persistent, and exhausting. My stomach muscles ached, my heart rate was constantly over 100 bpm, and i’d be panting with fatigue wherever i walked, as though i had just completed a marathon, when i had only just gotten out of bed. I slumped my back against the kitchen wall, my mom was busy with something. I just started crying and i slid down the wall till i was sitting on the floor. My mom ran over to me and asked me what was wrong. I told her i just couldn’t breathe. It felt like i was slowly drowning. She lifted me and made me lie down in her bed, and told me that i was just tired and needed rest. I made a joke with her, telling her that i always get sick when my brother goes away, it must be some kind of separation anxiety or something.
Scratch test for allergies
My dad’s dad has emphysema from smoking, and my dad decided to book an appointment for me to see the same lung specialist that my grandfather was seeing. The appointment was for late January 2015. So the first thing the specialist did was this scratch test. They put different particles on a blade and scratch it into your skin (cat, pollen etc.) to see if you are allergic to any of those particles. If any of the scratches swell significantly in a 48 hour period, then you’re allergic to those particles. None of my scratches swelled… So we did a few more tests. Lung function tests. Every individual is given their own disposable mouth piece to clip onto the apparatus to do the test, but really i still question the hygiene of the equipment. I’d blow into the tube for a base reading, then they’d make me inhale one packet from the bronchodilator. This dilator had 60 packets inside it, so after i used it they just wiped the fixed mouth piece with a sanitary wipe so the next person could use it etc. until all the packets are used up… I’m pretty sure vapour from me sucking and blowing on that thing got trapped in the inhaler, now the poor person who sucked on it after me, wow are they in for a nasty surprise.
I had another x-ray at this time, yep you guessed it, it was 100% clear. So; the specialist also diagnosed me with asthma, gave me some inhalers and said they’d do the same tests in a month’s time to see if the inhalers improved the situation. Ok, so at this stage i’m starting to feel really silly about myself… It’s just asthma right, i can lead a normal life; so i decided to start gym again. I was walking on the treadmill for nearly two minutes and i felt like i wanted to collapse. I jumped off thinking i was having a heart attack or something, because collapsing after two minutes of walking is pretty pathetic by my normal fitness standards.
I started a new job in February 2015, and it was such a far drive everyday. The one time I was stuck in peak hour traffic, with the summer heat just baking down on me. My head fell against the window to the side and i started to close my eyes thinking, ”God, i feel like i’m dying, what is this…” When i returned to the specialist at the beginning of March, my situation had gotten worse. He booked me into hospital on the Thursday and started treating me with strong (incorrect) antibiotics, cortisone and two other pills i cant even remember. The nurses tried to put the drip in my left hand but it ripped out, there was literally blood everywhere, and i’m not the type of person to feel faint at the sight of blood, but with the other fatigue it made me squeamish. The blood continued to pulse out of me and i asked the nurse, ”um, are you going to fix that?” And she replied to me, ”yes dear, don’t worry its your blood.” I was totally flabbergasted. I wasn’t worried about it being mine or someone else’s blood – I damn well knew it was my blood; the point is i’m freaking bleeding out over here… Anyway, they fixed it, and my specialist said that they’d keep me over the weekend, and the weekend specialist would monitor me till he was back on Monday.
The chick in the bed next to me would make me smile and laugh. What a good soul. She had a hole in her heart and was waiting for a heart transplant; she also had epilepsy. My first two nights were ok, but Saturday night was horrific. When the nurses came round every few hours to check my stats, I heard the one whispering to the other the one time, ”why is her heard rate so high?” So of course i sat up when i heard them say that, and i saw them looking at the settings on the drip. My resting heart rate moved between 140-160 bpm every time they took my stats for the duration of my stay in hospital. That same night i went to the bathroom and i swear i saw my dead aunt sitting next to my bed. It was comforting, but i questioned my sanity a lot at this time.
The weekend specialist had come in to check up on me. I told him i had coughed up some phlegm and had it in the pill bottle in case he needed a sputum sample. He never took the sample, he said it wasn’t necessary. So i left it; feeling silly and paranoid. I was discharged Tuesday morning with a batch of pills to take. Over the next few weeks my body swelled. my face, my ankles, knees, just everything from the medication. I had the worst pains in my knees. It was like someone was scraping the underside of my kneecap with a blade. I couldn’t stand or walk. I cried the pain was so bad, i couldn’t sleep. I think it was gout or something from so much medication, but it was all the wrong medication. I was stuck in traffic on the highway and the knee pain started and i begged God not right now… please let me just get to work. It hurt so bad putting the clutch in and out. It was my graduation, and a friend called me while i was still in the car asking where i was. I told him i couldn’t get leave from work as i just started this job; so i missed my graduation – i wouldn’t have been able to sit through it with the pain anyhow.
Nebulizing at home
April 2015: I was too afraid to fall asleep; i was afraid i might not wake up again. If i was asleep i’d just stop breathing; and i’d wake up the same way you’d surface from being underwater for a prolonged period; that giant gasp for air so badly needed. As i lay in bed that night, something terrifying happened. The grim reaper literally came up beside my bed, stooped so he was face to face with me and whispered, ”you’re gonna die…” then he just walked off and disappeared into black smoke, I shot out of bed with such a start, i forgot about the pain in my legs and collapsed as i tried to take my first few steps, my knees couldn’t support me. It was about another week before things got to the almost point-of-no-return. My heart rate remained in the hundreds. I just broke down crying, that feeling when you know it’s the end just hits you so damn hard. I would say i had just over a month left, and i’m not being dramatic. In that moment you just know… and everything is stripped away, the complexities of life just dissolve, and there is only simplicity, the core, and this calm from no where suddenly comes over you, and it’s actually quite beautiful, i can’t explain it, everything just makes sense in that moment – it’s just beautiful.
My dad rushed me to the hospital and a night specialist saw me, he said it was only a panic attack from the asthma restricting my breathing. That morning i was booked in for a CT scan. The results read, ”lower right lung damaged, possibly check for TB.” So it didn’t even show up on the CT scan… Guess what, i was finally asked to give a sputum sample, hooray! 2 GP’s and 3 specialists later, all with nothing to show for all their years of studying and experience… I was diagnosed with tuberculosis. Their excuse was that i was a white middle class girl and it didn’t make sense for me to have the disease. Wow, i really don’t think viruses and bacteria judge their host based on those arbitrary factors, but i guess they all felt pretty stupid and had nothing else to say for themselves.
You have to take pills for 6 months to kill TB, if you don’t do the proper course you could develop the drug resistant strain and you may die from it. I took 4 pills a day for the first 2 months, and then 2 pills a day for the remaining 4 months. The treatment itself was horrible too. My hair was falling out, it causes discolouration of all your fluids (eyes, urine etc. all get a weird orange/pink tinge), and many other side effects that i don’t care to relive at this time.
All i can say is that i am blessed, TB is the third deadliest infectious disease in the world. No one else in my immediate family got infected through me, and that is a true miracle, as my mom has epilepsy and she isn’t allowed to take any antibiotics. The bottom line is i had a misconception about the disease, i thought you had to be coughing up blood, or that it’d show up on an x-ray. I never coughed up blood, i never lost weight, it didn’t show on the x-rays or CT scan, but i did have TB. If you want to eliminate it and have closure, then ask for a sputum sample straight up. It can also attack your other organs, not just your lungs. Also, don’t let other ‘qualified’ people make you question your sanity, don’t let them make you believe that nothing serious is wrong or that you’re over-reacting. You know your body! And you’re not crazy!
I am happy that i almost died; i know that sounds crazy, but i have a way better perspective on the world and on life. I feel like those people who have had near-death experiences or have suffered through something end up being the nicest people in life, as the experience moves the unknown within you and everything becomes clearer, all wasted energy on petty trifles is instantly drained from you and it’s so refreshing. I can’t explain it, but it’s unique yet unmistakable; death is a lot like love – you’ll know when it’s found you.
✘ Hack It! ✘