In April 2023, I had a spontaneous seizure at work. I was taken to the hospital and stayed for 10 days.
On day 8, I had a lumbar puncture (also known as a spinal tap) to try and find the cause of the seizure. The following day, I woke up with an intense, sharp, left-sided pain. When I asked the nurse about it, she said it could be a side effect of the lumbar puncture.
Following my hospital discharge, the pain intensified, feeling like a stab between each rib cage. It traveled from one rib cage to the other after a few days, and I began feeling quite breathless. My heart was pounding and I would almost choke around aerosol sprays.
These symptoms worsened over a few days and the pain was becoming unbearable. My mum took me to my general practitioner, where they put it down to the lumbar puncture and new anti-seizure medication I was prescribed — no observations were taken at all.
However, throughout that night, the pain got so unbearable that I was almost screaming in pain. I couldn’t lie down or even sit still and my breathlessness was increasing so my mum took me to A&E (emergency room in the UK).
They took blood and gave me morphine to help the pain. The blood tests came back and the D-dimer was significantly raised, so they gave me enoxaparin to begin immediately and booked me in for a VQ scan the following day. The reason I had the VQ scan instead of MRI/CT is that I had already been exposed to a significant amount of radiation when undergoing scans for the cause of my seizure.
The VQ scan came back that I had multiple clots in each lung, which explains the pain on both sides. I was then commenced on apixaban.
However, when I was 17, I was diagnosed with a rare autoimmune disorder called immune thrombocytopenic purpura (ITP), which causes low platelet levels in the blood. The diagnosis of clots came as a big shock. My hematologist added some extra tests to my bloods, which is when I was also diagnosed with another autoimmune condition, antiphospholipid syndrome (APS), and have recently begun on lifelong warfarin.
This has changed my life and my lifestyle hugely. It took me months to breathe somewhat normally, I couldn’t be near any sprays or aerosols, I could only walk a few yards and even then I was gasping for air. Even daily things such as walking up the stairs and making my bed were a huge struggle.
If something doesn’t feel right then it most likely isn’t! You know your body better than anyone else, so if you aren’t happy with the answers, keep pushing! It could save your life.
Resources
Living Your Best Life on Blood Thinners
APS
Autoimmune Disorders and Blood Clots
