Newly Diagnosed and Pregnant with APS

Newly Diagnosed and Pregnant with APS

Hi!

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!

Night all......

21 Replies

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  • Dear Rebecca

    Congratulations on your pregnancy! I didn't discover I had APS until after my son was born..about to blog the whole story now...but just to say here, as someone who had 2 miscarriages, then an emergency c-section due to the as-then undiagnosed APS, I have every sympathy and wish you all the luck in the world. My son is now a fatly gorgeous 10 months old and a total delight in every way. The only thing I would say is stick with your instincts - say this to everyone I meet who's pregnant in any circumstances - I met a lot of medical people, GPS, midwives and health visitors, the latter being BY FAR the worst group who thought they knew better than me - ended up capitulating when my instincts were saying, that's wrong. You'll get there and it will all have been worth it.

  • Hi Eliza,

    I just read your blog, sounds horrendous what you have been through, thank goodness you are still here to raise your gorgeous boy! I can't even bear to describe what happened to me in the hospital. I will live with the regret for the rest of my life that I didn't speak up when I had a feeling the doctors had something wrong. I will never ever not act on my instincts ever again. I have lost all my trust in doctors. Anyway I've lived and learnt- the hard way. Thank you for your advice :)

  • Thanks for blogging Rebecca - regards the heparin injections, they don't have to focus on your stomach and it is better to move them around the fattier (no offence!) parts of your body, including love handles :) This avoids building hard plaques in your stomach which can affect how the heparin gets through. The bum is a good one if you can get your partner to do them for you ...

  • Hi Kate,

    Thank you for your advice! I had noticed the hard bumps under the injection sites. I have grown some lovely fatty bits especially to inject ;) I tried my injection tonight in a love handle! I had noticed it had been stinging more putting the needle in my stomach as the weeks have gone on and didn't feel that so much tonight. Tomorrow I might try my bum!! Ohh the joys :)

  • Rebecca,

    I am 47 years old, was first diagnosed with APS 16 years ago. I had two miscarriages and a pulmonary embolism all without being diagnosed. Then i had a full term birth with no complications (before the pulm. emb.) and i was finally diagnosed after i had a 39 week still birth. Believe it or not it was an attorney handling my lawsuit with the doctor who made TONS of mistakes during the pregnancy who told me about the tests i should have taken which led to my diagnosis. I was told i could not have another baby but low and behold i ended up pregnant and refused to terminate the pregnancy as they wanted me to. I started on heparin at 12 weeks and had a perinatologist care for me throughout. I delivered a 2 pound baby girl at 30 weeks (they did ultrasounds weekly so that they could determine when to deliver) they took her by c-section and she is a happy, healthy 14 year old girl today!!! With APS there comes a time when the cord begins to cut short the blood supply to the baby which is why its so important to keep a close eye on ultrasounds throughout. Best of luck to you and congratulations!!!

    Dianne

  • Thanks Dianne! :)

    Its so sad to think of all the babies lost to APS and Im glad to hear you have had a successful APS baby! Im having scans every 2 weeks at the moment and when I hit 24 weeks its meant to go down to once every 4 weeks but I want one every week when I hit 24weeks! I will definitely be discussing with my consultant. Im not taking any risks!

  • Hi Rebecca,

    Big congrats on pregnancy, take good care of you and go with your instincts.

    I`m 47 and very blessed that 3 of my many pregnancies worked out, emergency sections and early but my children are 27, 13 and 11, so I hope this gives others hope. They were all born before I was diagnosed, but not before symptoms which have been there since childhood,

    Hoping all goes well and sending hugs love Jessielou xxxxxxxxxxxx Ouch Heparin injections (sting) Had PE so had lots.xxxx

  • Ahhh thank you :) Having Nuchal scan this afternoon- most people's 1st scan but this is our 4th! Love watching baby growing and just praying all is well. It's amazing how differently APS affects people and the fact you had 3 babies before you knew is amazing- glad to hear they all arrived safely xx

  • Hi Rebecca,

    Hope you are well, how did scan go hon?

    Got everything crossed for you, Take good care of you.

    love and Hugs, Jessielou xxxxxxxxx

  • Hi Rebecca forget to say, I got told a useful saying and have stuck with it when fighting for my son who has Autism. "The wheel that squeaks loudest gets oiled" so keep Squeaking!!!!!!!!" It works. with education authorities and clinicians, much to there dismay I squeak very loudly and very often. Stick to your guns and go with your gut instinct!

    Take care hugs Jessielou xxxxx

  • Hey Jessielou,

    The scan went really well. Baby was asleep though so he didn't put on a spectacular show of womb acrobatics which I was hoping for! I'm sure he did as soon as the u/s was switched off!! The u/s lady was so impressed with baby's position though she went mad taking pictures. We came away with 7 photos! I compared the measurements and readings to the baby girl I was expecting at the beginning of the year (before I knew about my APS)- I had the nuchal scan only 1 day earlier with her and she was 58mm crown-rump and this baby is 72 crown-rump so I'm taking that as a sign he is getting more blood and nutrients. By the way I dont actually know "he's" a boy I just suspect!!

    And I did speak up about some worries I have and I will make sure to throughout the pregnancy.

    Thanks for your words of wisdom :) xx

  • Dear Rebecca,

    congratulations on the baby news ;) im kath now 47 - omg sounds so old written down but it only seems like yesterday when i too lost a baby mid way through pregnancy and had my daughter Rachel 21 yrs ago!! she did arrive early but i was on steriods to treat raised intracranial pressure as i was diagnosed with sagittal sinus thrombosis and later those naughty antibodies were found so now take life long warfarin. Rachel despite her early arrival at 30 weeks has outstanding talent and i am so proud. She has an amazing voice but trust me not from me.. i cant talk in tune!!

    So many go on to have successful outcome and since my pregnancy in 1990 the management has improved immensly. I too had clexane to inject and i rotated the sites as i remember the bruising and hard lumps at the most convenient sites to plunge...

    I really enjoyed being pregnant, showing off my bump, i wish you and your hubby much love enjoy, it will soon come around very quickly so make the most of the peace and quiet too :) i will look out for the posting in Feb :)

  • Hi Kathy,

    Thank you! :) Lol 47 is not old these days! I'm sorry to hear your loss still feels like yesterday... I hoped over time it wouldn't but I guess it's so hard to forget and when you have to go through a delivery rather than a surgical procedure it must scar a person- I think anyway. Being pregnant again is definitely bringing it all back for me and having all the appointments back at the same hospital. I keep having flashbacks- it's horrible.

    So you weren't on anything to thin your blood when you were pregnant with Rachel? Maybe the steriods you were on blessed her with her super duper vocal chords! I can't talk in tune either!

    I am trying to enjoy it but I am so petrified. I'm currently still in full swing morning/noon/evening sickness and being sick every other day. Bump is tiny at moment but I have bought myself a nice maternity top to show off a bump in very soon I hope. :)

    Believe me I am so looking forward to the day I say our baby has safely arrived- my husband and my parents will be on cloud 9 for the rest of their lives (and me of course!). I'm finding telling people I'm pregnant again really hard- when they say congratulations I find myself wanting to cover their mouths so as not to jinx anything or telling them to tell me that when I actually have a baby in my arms which is quite the conversation killer but they must understand?? Well they don't really but I hope they do a little.... :)

  • Hi Rebecca hope you have had a lovely weekend. ;-). Just to clarify i was put on clexane and other meds when i developed sagital sinus thrombosis during the 1st trimester. Converted to warfarin in the second trimester and was due to be put back on clexane at 34 weeks with view of c section at 38 weeks. Luckily as i was on dexamethasone for my raised intracranial symptoms, this in fact had helped mature rachels hearts and lungs. (They tend to use steriods during pregnancy if there are any concerns of premature labour). At the time it was not predicted i would go into labour early but in 1990 this was quite a unique case and hence did get published world wide once diagnosis was made after i clotted again when warfarin was stopped when rachel was 3 months old.

    I fully can understand why you dont want to tempt fate, it must be really hard to fully relax because of losing one baby and having APS. It wont be too many more weeks when the nausea settles and the tireness lifts hopefully. To have alot of sickness in the 1st trimester i was told is a good sign as your hormones are high and baby is well and truly rooted and growing. ;-) You and baby are both very precious and as you said previously you will be guided by instincts and ask questions away and if your not happy with the replies ask someone else. Sadly today it seems you have to do your own research and push for things to be done like having more frequent ultra sound scans, and i dont blame you. from what you have said and by comparison your baby is growing well and will soon be kicking you!! the most wonderful feeling ;-) holding rach in my arms at 30 wks i can remember feeling so amazing as the movement were just as they were when i was carrying her!!

    Lots of love and hugs take care do what you feel is right keep active and keep us posted of your progress xxxx

  • Hi rebecca, Glad to hear scan went well, I know the sickness is rough, but same as Kathy says I was also told it was a good sign, cos means hormone levels nice and high. I had midnight feast after my daughter was born cos I was so hungry, was fun cos staff fetched pot of tea and joined in. First food I enjoyed for months. Premature delivery with my son, he was lazy baby in the womb till last few weeks. I`m so blessed that my 3 made it, after losing so many times. I had steroids to help lung development with son, but not knowing about the APS meant nothing else and we got through. (wing and a prayer, I think) Got everything crossed and wish you and hubby all the best, lots of love to you both and the bump. Take care hon, love and hugs, Jessielou xxxxxxx

  • Hi Rebecca

    Hope everything is going well. I had Matt at 35 weeks a massive 9lb 6. He was my 6th pregnancy, then I had 5 more losses before falling for Caitlin. I had her and injected Clexain. It does get fun finding squidgy bits to jab as your tummy gets firmer but wonderful too, i managed without having to ask anyone else to do it cos I really didn't want anyone else to! Seems weird now when I depend on my husband to do so much.

    I'm so excited for you. Your prediagnosis symptoms sound so familiar. I hope your baby news will be good like mine was in the end. It was a difficult journey but a very worthwhile one.

    Give your tummy a stroke and God Bless

    Sharon x

  • Hi Sharon,

    I let my husband inject me once at the beginning when I was being a real wimp and he hurt me more than I was hurting myself so I gave him a whack and didnt let him near me with a needle again!! That's so sad you suffered so many losses. You must be such a strong woman to have got through them and kept trying. Im glad the end result was worth it. I hope I've got a surviver in me! I have a scan later this afternoon :)

    Rebecca x

  • Hi Rebecca,

    Just thinking about you, hope all is well and again good luck. If positive thoughts and prayers help you have mine and lots of others on your side.

    Everything crossed, Take care, gentle hugs to you all, love Jessielou xxxxxxx

  • Hey Jessielou, how are you?

    :) Thanks for thinking about me. I'm ok.... just wishing the weeks away! Nearly 15wks now. It is going quickly thankfully. Scan this afternoon and today is my first part time day off so just chilling out as I have been having so many headaches- I guess Im constantly worrying even when I dont realise. I woke up at 3am this morning and didnt get back to sleep until gone 6 so thank goodness I didnt have work!! Last day at work on September 15th and got a few things planned up to the big 24 week milestone to help speed time up and keep my mind occupied.

    Thank you for your positive thoughts and prayers- they are very much appreciated :) xxxxxx

  • Hi Rebecca

    Sorry only just seen this, my brain is just not working at all, new meds making me into idiot. hope it settles down soon. I`m ok thanks (little fib).

    Never mind me anyway, are you ok?

    I so hoping all is ok.

    Take care, Gentle hugs, love Jessielou xxxxxxxxxxxx

  • Hi Rebecca,

    I've just had a positive pregnancy test. I've never had one before. My two miscarriages happened before I knew I was pregnant. So.... I'm been switched to Heparin. My OB/GYN told me last year that carrying a baby to term with APS could kill me. My husband doesn't know yet. I'm at the doctor waiting. So...

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