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A Careless Misdiagnosis: “Muscular Cramps” Instead of Pulmonary Embolism
“It’s just a muscular cramp”. The general practitioner I saw dismissed my intense pains with a swift diagnosis. He gave me some muscle relaxants and sent me limping off.
Meanwhile, a monstrous pulmonary embolism gathered in size and strength, as multiple DVTs (deep vein thromboses) triggered by my Antiphospholipid Syndrome fed into it. This combination of blood clots is also known as a venous thromboembolism, and it can be deadly. At that age and being a chronic illness newbie, I took the doctor’s word at face value. Afterall, weren’t they supposed to know these medical things best?
I tried to attend school the next day, but was in so much pain that I turned around and took the bus home. I sat at a nearby McDonald’s, sipping on lemonade as I waited to go home at a decent after-school hour. I was afraid that my mother would be angry if she knew that I had ‘played truant’ again; my attendance score wasn’t exactly stellar.
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The Blood Clot That Changed Forever
I had been sleeping for days in an upright position, as lying flat had become impossible. I reached my limit that night however, as I gasped for straws of air in a desperate attempt to stay alive. My mother rushed me to the hospital in a panic, where the doctor injected a tube of painkillers after running some tests. I remember asking if I could have some more, and him sitting beside me in the quiet darkness, saying in a gentle tone, “It’s really painful, huh”.
It must have been one of the worst nights of my mother’s life. My father was in the middle of a meeting on the other end of the world, and my sister was at the police station for some minor offence that teenagers make. She said to me, “Don’t worry, everything is going to be okay.”
It’s funny how I often hear this line recited in hospital scenes on TV, and roll my eyes when the patient believes it. Yet when it occurred in real life, I sucked it up as truth without question. What I didn’t know was that the doctor had taken her aside in private, and had told her that if I didn’t make it through the night, I was probably going to die from the massive pulmonary embolism.
“What I didn’t know was that the #doctor had taken my #mother aside in private, and had told her that if I didn’t make it through the night, I was probably going to die from the massive #PulmonaryEmbolism.” #BloodClot #ChronicPain Share on XThe Devastation of the Pulmonary Embolism and DVTs
The lights in the hallway were dim. I was up in bed, forcing myself to vomit all the morphine out of my system. I wondered why some people like it; it made me feel so ill. Then a shadow appeared in the doorway, with a coat in his arms and luggage in tow. My father had rushed straight out of his meeting, and had spent the past 24 hours travelling straight to the hospital. He sang me to sleep that night like a baby.
The doctors had discovered numerous DVTs/blood clots in my legs, which had broken apart to travel up that dangerous path towards the lungs, cutting off my circulation to life in what is known as a pulmonary embolism. I hadn’t gone to the hospital right away, as the general practitioner I had seen days ago had dismissed the chest pain as a mere “muscular sprain”.
A pulmonary embolism can be deadly, especially with a blood clotting autoimmune disorder such as Antiphospholipid Syndrome. Gallons of water had accumulated in my lungs after only three days, and they had collapsed from the weight. The senior doctors in my hospital still remember this ‘extreme case of thromboembolism’, even after 20 years. It is now a case study on Antiphospholipid Syndrome and thromboembolism amongst them as well.
Excruciating Pain and Tainted Blood
I wasn’t even able to remove my own shirt, as the pain was excruciating and I was weakened beyond measure. The nurses had to cut it up with a pair of scissors, before dressing me up in the luminous green hospital garb. I was now clearly marked as ‘one of theirs’.
I also needed a drainage tube inserted into my lungs, and the technicians drove what felt like pliers in between my ribs to push them apart. I remember screaming in agony, when a technician questioned me in an unsympathetic tone, “Is it really that painful?”. I regret not biting her hand off, but it will be something I will do to anyone who dares ask such a stupid question again.
An endless flow of water mixed with tainted blood was drained out over the course of two months. My body had gotten used to bearing that heavy load from the pulmonary embolism, and would have gone into shock if we were to drain it any faster.
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When Will This Torture and Violation End?
It was two months of torture without any respite. The slightest stir, such as a gentle knock against the bed’s railing, triggered intense pain. The usual forms of comforting human contact, such as a hug or kiss on the forehead, were sears of agony.
“The slightest stir, such as a gentle knock against the bed’s railing, triggered intense #pain. The usual forms of comforting human contact, such as a hug or kiss on the forehead, were sears of agony.” #PulmonaryEmbolism #antiphospholipid Share on XEvery shift to get myself into a more comfortable position was a sadistic bargain, and bedsores added to the discomfort. Lifting my ass up a few inches to use the bedpan was another tedious chore (yes gross, but that was the reality).
All I could do for the first few weeks was to focus on fighting the pain, 24 hours a day. Distractions such as conversations or books only exhausted me further. I remember laying wide awake many a night, gazing at my guardian for the evening, praying that she’d wake, just so I could ask for a sip of water. I was rendered immobile, and utterly helpless.
Every investigation was exhausting as it was violating. Needles and tubes were stuck into and removed from my tiny veins, down my throat, up my ass, through my flesh. My arms were covered with giant bruises and sometimes, blood still had to be drawn through these injuries as there were no undamaged veins left. I have never had so many x-rays done in succession before; the complexity of my organs and skeletal framework reduced to telling shades of black and white.
Mindless movements that only take a second on a regular day – such as flipping to my side – now required the involvement of three or four nurses, and took up to 30 minutes. My garment would be soaked with sweat from the effort, and I would be screaming from the pain without any awareness of doing so. It was only after the aim had been achieved, would I then realise that the entire hospital ward had fallen into solemn silence. Strangers would gaze at me from the corner of their downcast eyes; I had become the momentary emblem of their mortality.
Simple Realisations from This Near Death Encounter with Pulmonary Embolism
I remember thinking to myself during this period in my life, “If there is a hell, I am pretty sure this is how it would feel like”.
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You realise how nourishing a single pop of colour can be, after being trapped between four blank walls for months on end – the view of a tree, a floral bouquet. I remember being moved to a bed next to the window, and feeling such comfort and amazement at the lushness outside – the colour of trees, the colour of life.
You realise what a privilege it is to be able to eat whatever you like, whenever you wish. It is ironic when food becomes a forbidden hazard, when it is often cited as a daily necessity, or a pleasurable experience. You realise what a blessing it is to be able to swallow without assistance, and to consume solid food. Feeding on a mix of mush and foul tasting juices for a prolonged period can be quite depressing. And dispensation of nutrition via IV drip doesn’t make you feel too human.
You realise how much skill it takes for your body to coordinate simple movements, when your legs collapse as you forget how to walk after lying in bed for two months. That being able to lie flat on your back to rest at night can be the sweetest relief in life. That the unconscious shifting of positions whilst you sleep are not mindless movements at all. Your brain is still hard at work, orchestrating miracles within your body, in order to maximise your comfort and wellbeing.
You realise how fragile mortality truly is, that your strength can be forfeited with the snap of a finger. Of the seven deadly sins mine would have been pride, but that was before. I learned that such a trait is an illusion to begin with, and the level of suffering you have to endure just to maintain it isn’t worth a goddamn thing when it breaks you. Pride is just a twig between the fingers of pain; resist it as much as you want, but it was never a fair fight to begin with. Ego serves no purpose, except to prolong your own suffering.
“#Pride is just a twig between the fingers of pain; resist it as much as you want, but it was never a fair fight to begin with. #Ego serves no purpose, except to prolong your own #suffering.” #ChronicPain #ChronicIllness Share on XI would say that a huge part of who I am now was redefined from this single pulmonary embolism incident, some good and others bad. Whilst many life lessons were compressed into my brain within that short span of time, it has also left permanent scars and opened new cans of worms. But we shall speak of these matters another day.
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Wow, this is so beautifully written, I feel like I was there. I remember when I was throwing up 75 times a day, the thing I missed the most was water. I just wanted to drink a glass of water. It’s amazing the simple things we take advantage of.
Whoa 75 times a day…I hate throwing up, even once. It takes so much out of your entire body. It *is* really amazing what we take advantage of or don’t even realise how amazing our bodies are to begin with. THank you for reading and sharing, too xxx
You’re so strong Sheryl. I agree with what you say about finding out things that seem so little are such a privilege. Just eating and drinking as you say. Or being able to walk in a straight line. So many people don’t realise that such things are a gift.
Just being and breathing and living is a miracle, isn’t it? Something we only realise when it’s been taken from us sadly.
I couldn’t imagine the pain you went through. You are one brave woman!
Aww…thank you so much lovely. Your support on the groups and on the blog is so much appreciated. Sending love xxx
Great article! Thank you!
Thank you for reading 🙂