Pregnant and frightened

Hi there everyone, my name is Beverley and I'm new here. I'm writing this post to get ideas of how I can cope with what is happening to me at the moment.

I'm 45 and pregnant (16 weeks) for the first time in my life. Four weeks ago I developed a blood clot in a superficial vein in my leg. As this was unprovoked, and due to my history, the team looking after me went looking for a reason and the test came back Lupus Anticoagulant Positive. I know I will need to have a repeat blood test to ensure this was not a false positive, but due to my history everything is pointing to a diagnosis of Antiphospholipid Antibody Syndrome.

In June 2013 I had a serious accident which resulted in multiple fractures and a two week hospital stay. 5 weeks after my accident I developed a Saddle Pulmonary Embolism. I had no warning that a crisis was unfolding. Fortunately I rang the ambulance in time and lived to tell the story. At the time it was regarded as a once off clot provoked by the risk factors that came from the injury.

Fast forward to now. The provisional diagnosis has answered a lot of questions and this risk is being well managed ( yes I have turned into a pin cushion taking 160ml of Clexane per day).

What I am struggling with is the fear of another catastrophic blood clot. I remained conscious throughout my whole Saddle PE experience and so I have very vivid memories of struggling to breath and the fear that this induced. I can't begin to tell you how frightened I am of having another clot. I wish I was ignorant of the impact of serious blood clots, but that is not the case.

How do you cope with this?

I would love to hear from anyone who has survived a serious clot, particularly if they have also had a pregnancy.

11 Replies

  • Congratulations Beverley on your pregnancy!

    I haven't had a major clot but I have had superficial clots and a mini stroke. I have also had several miscarriages due to APLS and another clotting condition called FVL.

    So I live with the fear of major clots and I lived with the worry of a pregnancy with blood clotting disorders but I did get through that pregnancy and that baby is now almost 12 years old.

    The good thing is that you are being anticoagulated and hopefully will be monitored carefully during your pregnancy so you have every chance of a positive outcome.

    I guess my best advice is to make sure you have a good medical team that you trust. Try and enjoy each day that the baby is growing inside you, every day is a miracle evolving and know that you are not alone.

  • Hi and welcome, you have landed in the right place for support. It is far safer once diagnosis has been confirmed and your medication started. Can you let us know where you are located and which hospital is looking after you. Many women on this forum have successfully had babies after starting on the correct treatment. I am one of those, I had three, despite a history of multiple clots in both legs. There are also others on here who have had similar issues to yourself and have come out the other side. Please use this forum as much as you wish to, members will be happy to answer your questions and share their experiences with you.

    Also big congratulations....


  • Hi and welcome.

    I second what my colleague, Mary, has said.

    Best wishes.


  • Thank goodness they have you properly medicated. It is a bit of a shock when you first get the diagnosis, and I would think even more so when pregnant. I found out after a stroke, when they had ruled out other possibilities - the doctor wrote my blood results in a letter and either forgot I would get a copy or forgot I knew enough about medical stuff that I would be able to check out what the blood results meant - a full on panic attack, melt down later I picked myself up and looked on the bright side that if you know your enemy you can at least either fight it or call a truce. I am don't panic every time I get a headache, pain in chest, calf muscle or get short of breath but it would be easy to go there. Depending on where you are, they do offer health psychologist counselling do help deal with long term conditions if you do have difficulties getting over that fear feeling, but I have a feeling that you might be a bit too busy for a while!

    Best wishes and hope all goes well for you - and keep in touch with this site - even if you don't post, I don't that often, it is comforting to come on and read. It is also a very well managed community so only helpful, non commercial stuff makes it on here, I have been on other ones which are not as brilliant as this one!

  • I was diagnosed during IVF treatment 9 years ago and now with an understanding obstetric team have a beautiful 8 year old. My only treatment point would be to ensure that they increase your clexane dose with your pregnancy weight as doses are weight dependent.

    Congratulations on the pregnancy. You will be on edge but enjoy the feeling of incubating a new life. They will always increase your ultrasound visits with APS so that they can ensure the placenta remains healthy.

  • Thank you everyone for your thoughts and support, it is much appreciated.

    To answer Mary's question I'm in Australia. At the moment I live in Darwin and so all my care is through Royal Darwin Hospital (RDH).

    In remote Australia care can sometimes be problematic, but I actually think I'm being well looked after. The last blood clot took place when I was in Alice Springs, so I was initially treated in Alice Springs Hospital (ASH). When the blood results came in not only did RDH ring me to come straight in to alter my Clexane script and arrange a Haematology consult, but the doctor I saw at ASH rang me with the results and checked that I was indeed being looked after by RDH.

    My partner lives in Melbourne, so at the end of the financial year (30/6/15) all being well I will be moving there and my care with be through Monash.

    I have been in a long distance relationship for over a year now. When I had the Saddle PE the medication for that played havoc with my injury recovery. So when my partner needed to move to Melbourne for work I needed to stay behind for ongoing surgery and rehabilitation. The last year and a half has been some journey I can tell you!

  • Hi, I was diagnosed following my first pregnancy where I had sudden severe onset of pre-eclampsia a HELLP syndrome and had my son at 30 weeks as an emergency section, we were both seriously I'll and in IcU, he was very small 2lbs, as he'd obviously been receiving inadequate blood supply for some time, but we were unaware until I became ill. He was in hospital for some time. He's now 8, healthy but still petite! I pushed my GP to get tested for various things including Lupus and anti phospholipid syndrome in the advice of a consultant collegue of a relative. And sure enough I had APS. I took aspirin and clexane during my 2nd pregnancy. I was monitored very closely 2 weekly growth and Doppler scans from 26 weeks, then weekly from 30 as my daughters growth took a dip. But we managed to keep things going to 38 when I was induced and had a healthy but petite little girl.

    I am so thankful I got diagnosed, as the medication, care and attention I received in my second pregnancy undoubtedly led to a much better outcome. I found the 2nd pregnancy stressful waiting for something to go wrong. But each week after 30 weeks my worries eased.

    You should be carefully monitored and you are on the right medication. As well as aspirin and clexane injections. I was also put in high dose folic acid by my consultant as there was an increased risk of neural tube defects, I can't remember if this was linked to APS or other factors.

    Good luck, I know it is hard but try and relax enjoy this time and look forward to a beautiful baby.

  • Congratulations on your great news of your pregnancy.

    I myself was pregnant at 45 and gave birth to my lovely daughter, Alexis Klea, at 46, with the treatment of Clexane and low dose aspirin. i have an elder son of 23 and 11 miscarriages before my pregnancy. My injections were carried on through 36 weeks and delivery at 38. A clot developed on the placenta and Alexis lost 200mls of blood at the end but, with many scans and a brilliant team she arrived safely.

    My APS only affects me with recurrent miscarriages. I can't imagine how you are feeling but I am wishing the very best for you to have a healthy pregnancy and good health to you.

  • Hello and welcome from another Aussie! What they all said-good advice. If you are on twice daily 80mg of Clexane you should be well anti coagulated. Don't know of any doctors in Melbourne (I'm in Sydney) and a colleague of Prof Khamashta's consults here. Unfortunately, most of the ED docs at the hospital aren't that aware of APS so keep a good record of all your tests, especially now that your pregnant, to take with you if you have the slightest chance of experiencing a clot.

  • Hi Bev, In answer to your original question about struggling to live with the fear of another major blood clot - well I too had a bad PE and like you remember struggling to breath not knowing what it was. I had been taken to the Doctors and told it was strained muscles and sent home because I was on crutches for a broken ankle. No one knew about my APS then despite numerous symptoms and 3 previous miscarriages as they hadn't joined up the dots. Eventually my husband called back the Doctors and emphasised how bad I was and spoke to a different person. They said to take me straight to A&E as he suspected a PE and it was. Even then I was not tested for APS and a few years later went on to have a Stroke. All I can say is that the fear does subside. I know Im being treated now so I panic less. I cant say that when things happen out of the blue that I don't think that it might be something to do with APS, but at least now I have a strategy in place, I have a good team of Doctors I can call upon and my family have a emergency plan (sort of) that they would use.

    You have to let go of the past and live and enjoy each day afresh or this condition will rule your life and there is no reason it should.

    Congratulations on the pregnancy, you are in a better position this time then last so as others have said try and relax and enjoy it this time round and take each day as it comes. x

  • Thank you everyone for your comments and best wishes. It has really helped seeing your comments and to know I'm not alone. I'll let you know how it all goes :)

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