My name is Rebecca, 25, I discovered I had APS after losing a baby girl midway through my pregnancy in January this year. Usually investigatory tests only seem to be done after 3 miscarriages but partly due to the negligent treatment I received at the hospital and a letters to PALS I was offered follow up tests. 2 Bloodtests showed high anti-cardiolipins antibodies and I also have factor v leiden (an inherited hypercoagulability disorder- my mother and father are now both being tested to see who passed it on to me!) I'll be 12 weeks pregnant next week (2nd pregnancy, hopefully resulting in a baby this time) and have had my booking in appointment today with a midwife/robot(!) at the hospital. I am high risk consultant led and I don't think that quite registered as the midwife showed me leaflets for breastfeeding (yes I hope I will- I hope I have a baby at all to feed), homebirths (not that I would be allowed one/want to risk one!) the midwife-led birthing centre (nope..again Im high risk consultant led!!) It didn't really register! Luckily the consultants are a lot better than the midwives!
I'm taking aspirin in the morning and heparin in the evening, my stomach is rather colourful at the moment! I wonder where I will inject when I have a huge bump!? Love handles maybe!?!
So other than losing my baby other symptoms? I had always felt something was not quite right with me. At high school I was really sharp and could blag a sensible sounding answer to most questions asked in English literature about the meaning of this or that in a book or come up with a debate for either side of an arguement etc. My memory was great and I did really well in exams. I seemed to lose this ability as I got older and started forgetting what I was saying half way through a story and found myself having to ask the person, "what was my point?", "why am I telling you this"?! Very frustrating and it definitely dented my confidence. I started a new job last year and I noticed even more then that things just weren't sinking in. My memory was getting awful. I would read emails and then not remember what they said or that I had even received it. My balance is awful, I always bump into the person I am walking along side and I get awful motion sickness which could be caused by something as simple as thinking my husband is going straight on when driving, but he takes a left turn instead. I get really bad headaches and migraines. Oh my goodness I almost forgot, the cold fingers and toes and EARS! If it's slightly windy my ears hurt so bad! Earmuffs are my saviour when its cold!
I came to the Patients Forum at St Thomas's in May and was encouraged to hear that once APS patients were being treated that they hardly ever had headaches. I have not found this and every day I come home from work with a headache. I know I should be doing some exercise to help my circulation, especially being pregnant but it just isn't happening. I crawl into bed most days at half 5, tonight being no different. I have now handed in my notice at work, I know I will lose out on maternity leave and the right to return to my job etc and if this pregnancy ends before it should I would then have to find another job, but I can't go on like this! I've put me and my baby first and Im quite proud
Anyway that's all from me tonight! My pregnant Aps brain is shouting at me to get some sleep!