Sticky Blood-Hughes Syndrome Support

APS during pregnancy - How to take care bit worried

I'm new here..! I had two miscarriages one is at 9 weeks and other one is at 22 weeks. For second miscarriage baby was identified with few anomalies like club foot, hole in the heart and placenta is jelly like. Hence it got terminated. I have a history of blood clot in brain due to this I took heparin (Clexane 40 mg) injection from my 7th week, but with that heparin(clexane 40mg) injections blood became very thinner and it got bleeded like anything. Went to hospital in emergency. At that time baby was safe but again at the 16th week scan few anomalies identified, later due to hole in the heart baby got terminated. After termination when I met hematologist we came to know that I have syndrome of APS.

Now we are planning for a pregnancy but I’m totally scared and worried with thought of heparin injection, if that going to give bleeding issues? / how my baby going to born without anomalies?. I’m getting depressed day by day. Please help me with some positive stories or thoughts. Thanks in advance.

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Hi welcome, Im so sorry for your losses.

Youve come to the right place, can I ask who and where were you diagnosed with APS/Hughes syndrome? What medical advice was you given?

Most people are given aspirin and/or clexane, in your case your dose of clexane may have been too much. What it does say it that you need specialist APS care and a good support network around you.

Im sure you will get some real positive experiences from others.

Take care xx

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Thanks for your reply Holly Heski, I am from India. APS diagnosed in continental hospitals, hyderabad. Currently i'm taking ecospirin 75 mg. When i'm pregnant my haematologist asked me to visit to know the medication of heparin injections.

Thanks again for your quick response.

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Thats good that you have a doctor who knows about APS and is going to look after you. If you read my profile you will see I lost my first baby but still went on to having 2 more despite no diagnoses or treatment, so for you having the correct treatment gives you more hope.

As said before you will get many experiences on here that will give you good encouragement. xx

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Hello and welcome, it is excellent that your doctor over in India is helping you in the correct way, and hopefully they will also check your thyroid, vitamin D, B12 and Iron alongside everything else. Sorry to hear about your losses. It now sounds as if you have the correct help. MaryF

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Thanks Mary. Yes gone thru with the tests of Vitamin D /B12, Iron and TSH. All reports are normal.

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That is excellent news! MaryF

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I am not sure I can put you totally at ease because I know from experience that after you have suffers the loss of a child you will never feel at ease during pregnancy until you hold the child in your arms. But if it helps you to know, I have had 4 miscarriages and now have 4 healthy children. One was a month and a half premature but got to come home with me after I healed from c-section the other was two weeks early and low birthweight, my youngest was normal weight and on time but I passed huge clots with her and had many health issues after her birth. My fourth child was an adoption because After my third the doctor said it would not be safe for me to deliver again. Try not to focus on what birth defects could happen. Stress is not good for you. I have several friends who have had children with birth defects both severe as well as mild. They love their children and have learned how to handle their special needs. With the right doctor keeping your blood properly thinned with the right meds you should be able to have a safe pregnancy. Maybe aspirin alone would work for you if you are worried about stronger blood thinners. I am sure there are women on here who have more experience with anticoagulants during pregnancy. I was only on aspirin. I will pray for you. I know loosing a pregnancy is very difficult. I hope my words encourage you some.

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Thank you so much for your encouragement. I'm trying not to stress on things but some times unknowingly i'm getting worried about the things. In my life, after my marraige in next couple of days "sinus venous thrombosis" was identified to me and i was hospitalized.I was gone thru with different hospitals and met various specialists. It took 7 years for me to settle down for my SVT. Till these many years i didnt get any pregnancy possitive. Even that possitive 2 instances are miscarraiges. These all are making me very down. Trying to cope up with things bus some times unable to do that. Practicing to do yoga and meditation dailly. Till i get pregnancy i will be with positive energy but as and when i get the UPT +ve the tension again starts. How my baby growing inside? does the blood thinner going to get bloated? Does the previous namolies going to arise again? all these will run in my thought process.

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You may have already said this but how far along are you in your pregnancy?

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At second instance for 22 weeks. But we got to know that anamolies at 16 week.

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Currently i'm 6+weeks pregnant, my doctor adviced me to take clexane 40 mg as Beta1 Glycoprotein igm value is very high (70), but bit tensed for bleeding issues.

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That's so hard for you it's very scary.

I have taken aspirin for my 1st pregnancy and for my 2nd I had aspirin and daily heparin injections. Have they said there is a connection between the heparin and the abnormalities? It may have been totally unconnected.

Daily heparin isn't the nicest but u just have to think of why u are doing it.

I'm sure that there is a good success rate for pregnancy once diagnosed and treated, it's understandable to be scared and I hate that so many people take pregnancy for granted, it's such a scary time for so many of us x

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Respected madam,

One Thing I noticed in your above statement, you are scared, or feared little bit.

Firstly take courage, prepare yourself , keep your mind calm, every day early morning make 21 minutes of dhyan, Think positively, think all is well, do things which will give you happy, eg meeting your friends who are always with you, your best friends, parents, sisters, brother s, teacher s, Guruji of your family, visit temples near by you, spend time with your family,

Make yourself strong, swami Vivekananda say to survive in this world we need " muscles of iron and nerves steel "

Always Hope for the Best

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Hi,

This time they know about the HS/APS and you have got a Hematologist who knows about this illness. That is very good. Can you call her up if you are worried and ask her questions ?

As Mary said your bloods were excellent! That is very good!

If you are worried all the same, which is not a wonder after what you have been through, there must be your Hematologist or a person who knows your "case" willing to talk to you and answer your questions.

It is natural you are worried. I do think you are in safe hands but all the same if you fell worried, try to have your questions answered. Best of Luck!

Best wishes from Kerstin in Stockholm

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