Blood clots, pre eclamsia in first un... - Hughes Syndrome -...

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Blood clots, pre eclamsia in first unsuccessful pregnancy. Now looking for a ray of hope in second.

Ansh1988 profile image

Hi I am looking for some positive pregnancy stories. I had a stillbirth last year at 24 weeks gestation because of early severe pre eclampsia. Later developed extensive bilateral dvt all the way up to my heart. The doctors said it was an acquired thrombophilia. I am on blood thinners and still residual clot burden is left in my IVC. They say its unlikely to resolve so ill be on lifetime blood thinners .Now after an year I am planning a pregnancy but is super scared. Pregnancy is planned and is high risk off course. I have been told to take clexane, aspirin and calcium tablets. Anyone with similar situation with a positive outcome please share. I am too scared and slowly loosing hope.

14 Replies
MaryF profile image
MaryFAdministrator

Hiya please don't lose heart or hope, it would help to know where you are located? Vital that you have a team around you, (medically speaking), who fully understand this disease, prescribing what you need and with regular monitoring, including your thyroid, b12, folate, ferritin, D and to help you also relax about it all. Many of us on here with diagnosis have gone onto have successful pregnancies, but we do understand it can be stressful. My oldest baby is now 32 and my younger ones, 22 and 24. Use this forum to ask questions! MaryF

Ansh1988 profile image
Ansh1988 in reply to MaryF

Hi Mary thanks for a quick reply... I stay in New Zealand and have a beautiful medical team with me. They have planned my next pregnancy keeping in mind what I have gone through. Your reply definitely encourages me and keeps me more positive.

Hi there,As Mary says don’t lose hope.

I don’t have experience with pre-eclampsia but do have experience with blood thinners in pregnancy due to losing my first baby half way through pregnancy and finding out I had APS. I also developed a thyroid problem (Graves’ disease) and my thyroid is now under active since pregnancy no2, I also developed gestational diabetes in all my pregnancies that could not be controlled and I had to have insulin injections too. So although not all the same issues I still have multiple issues and I have had 3 successful pregnancies (out of 5). It is worth all the worry. I hope your dreams come true and you have a good GP/midwife etc wherever you are.

Ansh1988 profile image
Ansh1988 in reply to Rebecca_H

Hi Rebecca Thanks for replying me. So sorry to hear that you had so many issues when you were pregnant. With your story I am more inspired by you. It seems you really acted like a warrior during your pregnancy. I do have a haematologist, MFM and an obstetrician in my team. Pregnancy is planned by them. Thanks for encouraging me. I have a question, did you ever had DVT with APS? Before, during or after pregnancy?

HollyHeski profile image
HollyHeskiAdministrator

Hi, there's lots of hope but more importantly medical care has now advanced so much for APS, that you don't need to rely on hope alone.Loosing a baby at what ever stage is traumatising but we also have inner strength and determination to get us through the next time.

My experience was many years before my diagnoses and treatment, please read my bio?

Lean on those doctor's and family around you, it will be hard mentally, just take it slowly and easy said than done try to keep the stress at bay.

Please stay in touch and ask as much as you like on here, as we really share our experiences and can give support and encouragement.

KellyInTexas profile image
KellyInTexasAdministrator in reply to HollyHeski

“…don’t need to rely on hope alone”

Brilliant!!!

Ansh1988 profile image
Ansh1988 in reply to HollyHeski

Thanks for this... it changes everything now. May be out of fear of seeing those things again I forgot how good my medical care is planned now. Actually when you look in this way it changes everything... I needed it...thanks

Hi Ansh,1988 - I’m sorry to hear that you lost your baby and I wanted to send a message of hope as your situation sounds very similar to mine.

Our first daughter was stillborn in July 2014 at 30 weeks due to undiagnosed APS, early onset preeclampsia, and therefore restricted blood flow. A week later, I had multiple bilateral pulmonary embolism which was initially thought to be due to the emergency c section. I was put on warfarin for 6 months until I was later diagnosed with APS. I am now on rivaroxaban and have been since 2015, with the exception of my second pregnancy (in 2017/18) when I was looked after by an incredible medical team who monitored my clexane and aspirin each week and delivered my now 3 year old daughter safely by c section at 37 weeks.

My clexane dose was increased to 100mg twice a day towards the end of the pregnancy so it’s important that you stick with your medical team, ask any questions if you are ever concerned or feeling that something is not quite right, and trust your instinct!!

I wish you all the very very best with your next pregnancy x

KellyInTexas profile image
KellyInTexasAdministrator in reply to merrohawk83

Thank you for your helpful and informative and very personal story merrohawk.

What a very difficult journey- and so happy you were able in the end to have your lovely 🥰 daughter. What a joy!

Ansh1988 profile image
Ansh1988 in reply to merrohawk83

Thanks for sharing your story and yes its very similar. I have recently discussed this with my haematologist and she says that yes depending upon your situation your dose may be increased as well. I asked this even before your post so thats why I can relate very much to your journey. I do trust my team with this but I always make sure that I am informed at every step so that if something happens in the later pregnancy I don't stress out. Its all about managing my stress now as said by merrohawk83. Need to keep stress away. In saying that I feel little light hearted that someone who had a similar situation had a beautiful outcome in the end. My mother always say don't forget there's rainbow after a storm and light after darkness.

KellyInTexas profile image
KellyInTexasAdministrator

My husband and I went through the wars before I was diagnosed. ( I’m now 53, and was diagnosed at 47.)

We had our troubles with multiple miscarriages and even a late ( 12 week) ectopic rupture.

We spend a vast majority of my mid , late and early 30’s constantly pregnant…

We did have 2 successful pregnancies- I think just luck. We the antibodies in a waning phase? Possibly.

My mother,on the other hand- had the preeclampsia complication. She also clotted terribly after each pregnancy ( a few successes.) with DVT’s and PE’s. She also had DVT’s and PE’s intermittently during non pregnant states.

She clearly had APS, but there was no name for it at the time- had yet to be discovered.

I think Holly Heski has said it best! You have a diagnosis and treatment on your side.

Yes I do agree on this that I do have a treatment plan and we know what's happening with my body. I understand how tough it is to treate something when its not diagnosed properly and you don't know whats happening. As said by Hollyheski don't need to rely on hope alone. I have a good team that's working hard for me to have a successful pregnancy..

Oh my God !!! Thank you so much guys. Your personal journeys and experiences have made me more positive. I should trust my doctors in what they are doing and going with them together is what should be my journey towards my ultimate goal. Also in saying that I would keep myself informed with this beautiful forum and share my journey with you guys. I've made a few checklist for my next appointment. I have another question:

Has any of you planned a pregnancy with stubborn clots which are not dissolving only? I did raised this question with my haematologist they said we will keep an eye on those as well. So I thought of asking has anybody planned a pregnancy with an already existing extensive clots?

HollyHeski profile image
HollyHeskiAdministrator in reply to Ansh1988

You question may get missed at the bottom of this thread - if you dont get a few answers don't give up, try posting a new question.Not during pregnancy but I did develop a clot in 2006 in my sub caviar artery, the way its situated, although they have tried twice by angioplasty, it is still very much alive. They check on it every few years but no change in size or movement. I have learnt to 'live with it now.

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