I was 9 weeks pregnant with my fourth child, I was suffering from hyperemesis gravidarum (extreme morning sickness) and began to develop a headache on the right side of my head. Assuming it was due to the side effects of the anti-sickness medications I carried on as best as I could with my young children.
By the evening of day three I couldn't lift my head off the pillow and felt pressure behind my right eye, at this point I decided to call 111 for advice because the headache pain was unbearable. Sure enough I was whisked off to hospital A&E in an ambulance, I spent the night there and was put through the CT scanner the following afternoon. At this point I couldn't walk more than a few feet without collapsing and having extreme weakness.
I remember being called into a room and being told I was being admitted immediately, and was then told I had a large cerebral venous sinus thrombosis in my brain, and that had I not have come in when I did then I probably wouldn't have woken up in the next few days.
As a mother I was absolutely distraught that this was happening to me, what was the prognosis, will I get better, what's going to happen? My mind was a blur of questions.
I was given clexane injections twice daily and transferred to a specialist unit in another hospital further away. Within a day my vision had become blurry, I couldn't speak well, and my memory was terrible. The doctors attempted a lumbar puncture twice to measure the fluid in my brain, but both were unsuccessful, so I was given a powerful drug to drain the fluid and relieve the pressure in my head. For the first time in my life I could barely walk, I needed a wheelchair, I needed supervision to wash, and I couldn't eat. The stress of the potential of losing my baby was just horrific.
I was discharged after two weeks of observation and carried on self-injecting the clexane; which was a big hurdle to overcome and I found watching YouTube videos of other pregnant women injecting the clexane very helpful.
It took a long time to recover my strength, mobility and memory, I had to use a wheelchair for around three months, I couldn't stand for long periods so had to have a support chair in the kitchen and I couldn't walk up the stairs due to the pressure in my head, any physical exertion caused dizziness and blackouts. I had to move my three boys’ downstairs and sleep on an airbed in the lounge.
I had countless antenatal appointments, eye tests and neurology appointments which I needed escorting to, and as my pregnancy progressed the stress of the situation took its toll on my relationship and I became a single mother.
With the support of family and friends I slowly began to be able to be independent, however I was still limited to what I could do physically. Luckily, the baby grew very well and I managed to carry her until 38 weeks.
The blood thinners caused numerous complications during delivery and I was put under general anaesthetic for an emergency C-section. I was then kept in for about four days and had to continue with the clexane for six more weeks.
After follow-up appointments and numerous MRI scans that showed no progression with the blot clot, I was allowed to attempt stopping the blood thinners. However, I soon found the headaches, dizziness and painful pulsating in my head too much to cope with. The haematologist decided it would be beneficial for me to be on lifelong anticoagulation as we found I could tolerate warfarin and it eased the symptoms quite well.
My daughter is now 13 months old, I still can't handle stairs well, but I feel so, so lucky to still be here with my children, being a single mother with my condition is extremely hard and people don't realise the stress blood clots can cause. Being a young woman on warfarin means I have extremely heavy periods, to the point where my GP has referred me for a hysterectomy.
I still worry for the future but knowing I'm not alone helps with the acceptance of my condition.
I have just had confirmation that I am going to be university in September 2020 to do an Adult Nursing degree, so life doesn't have to stop after the clot! Life goes on, try to remain optimistic. I never thought I'd get this far!
Laurel L.