My Story
My experience with blood clots was the final twist that nobody saw coming in my story.
In June 2022 I was brought in for an emergency C-section at 35 weeks pregnant after having a hard pregnancy, being extremely swollen, and having uncontrollable blood pressure problems. I was later told that my liver and kidneys had started to shut down, and I had gone from having pre-eclampsia to HELLP Syndrome. If that was not scary enough, my baby had his own health problems, and as a result, he spent 4 weeks in the special care unit in Mullingar and a week in the cardiac ward in Crumlin. When we finally got him home, I felt like I was on cloud nine. I had him home, my little girl was preparing to start preschool at the end of the summer, and our family of four was complete.
Over the next few weeks, I started to develop headaches but having a newborn and a history of migraines, I just assumed it was a combination of lack of sleep and not looking after myself properly. The headaches didn’t go away, and it got to the stage where painkillers stopped working. I was taking Neurofen and Solpadine together every 4 hours yet the headaches persisted. I booked an appointment with a local GP who reiterated what I had already thought was that it was just the stress from the last few weeks and to give my body a chance to recover. So, I did, but towards the end of the following week, my vision started to change, things were getting blurry and, for want of a better word, dull. It was like someone had turned the brightness down for me.
I made another appointment with the doctor but also one for Specsavers. I went for an eye exam on the 21st of August 2022 and was sent immediately to the Royal Victoria Eye and Ear Hospital for scans. There I was told I had swelling on my optic nerves but they couldn’t see what was causing the swelling, so I needed an emergency scan. I was sent to Tullamore as this was my local hospital, where after CT, MRI, and a lumbar puncture I was diagnosed with Idiopathic Inter cranial Hypertension, excess fluid around my brain that was just building instead of draining away. A person’s normal pressure is between 16-20; mine was at 42. I was put on medication to help drain the fluid and discharged on Thursday, the 26th of August.
My little girl started preschool the following Monday, and I was so happy to be home to bring her for her first day. But I only managed a week at home before I took myself to the Hermitage on the 3rd of September 2022 to seek further help. The doctor in A&E advised me to go straight to Beaumont. There I was put on IV painkillers and sent for more scans. I was admitted and my dosage of medication was increased. I had a repeat lumbar puncture which resulted in no improvements to my condition. After an appointment with the Ophthalmologist and a Neurologist, it was decided that I needed surgery to install a brain shunt to relieve the pressure on my brain.
On Thursday the 8th of September 2022 I had my shunt installed, and all went well. I was a bit sleepy on Friday but nothing I didn’t expect. I woke on Saturday with another terrible headache once again. I was very nauseous and struggling to keep food or water down. My parents came to visit me, and I was so weak, they had to help me to the bathroom, I slept for the majority of their visit, and I had no energy.
Once my parents left, my doctor decided to increase the setting on my shunt, thinking maybe the fluid wasn’t draining fast enough, and arranged another scan. I should have known that something wasn’t right because the doctors were hot on my heels after the scan and were back up to my room about 10 minutes after me. They told me that the radiologist was concerned about my sinuses, and they needed to do a repeat scan, this time with a dye injection to highlight my veins. I was rushed back down and again they were back in my room almost immediately after my scan. It showed a severe venous sinus thrombosis on the right side of my brain and lots of small clots all over the rest of my brain. I was getting ready for an emergency thrombectomy to remove the major clot. The surgeon spoke to me before the surgery but if I am completely honest, I don’t remember much of what he said. He did tell me that he knew he wouldn’t be able to remove all the clots but felt confident that he could get the major ones.
I woke up in ICU on a drip with medication to thin my blood and blood tests every 4 hours. After a week in ICU, I was changed over to blood thinner injections and moved onto a ward. My surgeon came to see me and told me how “spectacular“my scans were before the surgery, I had a clot in every vein in my brain, the deep veins and the superficial veins. After another 2 weeks, I was discharged and finally home to my babies.
Some weeks later I was told, I was only a couple of hours away from not making it, if my thrombosis had been missed the outcome could have been much worse. I am very aware of how lucky I am to be here, at home with my family, and able to tell my story. I wasn’t aware of the risk factors associated with blood clots before. Mine included my recent pregnancy, my weight, my surgery, and my hospital stay.
Please be aware of the signs and symptoms and never take the signs your body is telling you for granted.
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