Anxious: Done a pregnancy test today... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Anxious

My4angels profile image
19 Replies

Done a pregnancy test today and it was positive! It's taken us a year to conceive and a year since my last miscarriage. Was diagnosed with APS last month. I'm feeling so anxious when I should be over the moon. This is the 5th time I've been pregnant, unfortunately none have been successful. Silly question but what happens now? Obviously I need to phone docs next week but what happens after?

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My4angels
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19 Replies
daisyd profile image
daisyd

Bless you see your Doctor and he/she should be able to give you advice,I am no expert but I know chances have improved with aspirin and heparin. Congratulations, wishing you all the best

My4angels profile image
My4angels in reply todaisyd

Thanks daisyd :)

HollyHeski profile image
HollyHeskiAdministrator

Congratulations - its been a long road for you and appreciate your very anxious.

When they diagnosed you with aps, did they give you a plan of care, once you got pregnant? Usually aspirin and/or heperin? Have you got an aps specialist? If so, contact them on Monday, if no specialist then contact your gp.

My pregnances were prior to diagnoses, many years ago, progress has made such advances now, that hope and positive outcomes are achievable.

Hopefully others on here that have been in your shoes will share their experiences and help you cope with the stress.

Try and enjoy your good news today - just take one day at a time. X

My4angels profile image
My4angels in reply toHollyHeski

Thanks HollyHeski

All i was told was i would be started on 75mg aspirin daily (which i have already been taking) and daily heparin injections. I contacted my GP surgery today and the earliest they could see me is 23rd June! It's too ridiculous for words, so i have to be there at 8am tomorrow morning in order to hopefully get an emergency appointment. This is not helping my anxiety!

I am staying positive, at least i am on the right side of diagnosis and i have started the aspirin already.

justyrose profile image
justyrose

Get to a doctor immediately. You will be put on baby aspirin (or low dose) and heparin. You will be injecting it daily. Good luck!!!!!!!

Groovy profile image
Groovy

Get to the hospital asap! I was told that I'll be given heparin injections to administer every day and I think aspirin as well. I really hope you have a successful pregnancy hun xx

Fusch profile image
Fusch

Success rates are something like 90% with treatment, so the chances are very good (although I had losses also due to my age)

Your haematologist should prescribe heparin and refer you to an obstetrician, probably you can get frequent reassurance scans too.

I found it so stressful, hypnotherapy relaxation really helped me

Wittycjt profile image
Wittycjt

Congratulation and may this pregnancy be successful. I'm sure you're over the moon! Cindy in NJ

Sara_A profile image
Sara_A

The obs/gynae saw me very early on like 5/6 wks did a scan to check viable pregnancy then started me on heparin inj daily. I've always been on aspirin anyway as diagnosed before pregnancies. So really they just need to get u on treatment asap if u are not already on aspirin?

For my first pregnancy I was just on aspirin then the 2nd aspirin and heparin (from 6 weeks til 3 months after birth!)

I'm sure that once u are on treatment now that they know that u have aps all will be good.

I let my rheumatologist know straight away too.

Good luck, I know it's such a worrying time for you but try stay positive now u know what u are dealing with.

My4angels profile image
My4angels in reply toSara_A

Thanks Sara_A

That has made me feel a whole lot better knowing you were 6 weeks when you were put on heparin, i am only 3 weeks but have been panicking as i have no idea when i should be starting them! I am taking aspirin daily, have been since diagnosis over a month ago so hopefully that is doing the job until i get on the injections.

MaryF profile image
MaryFAdministrator

Hi there and welcome, where are you located? Congratulations by the way, and you do now need to be under the care of a Hughes Syndrome/APS Specialist, as expert management is required. MaryF

My4angels profile image
My4angels in reply toMaryF

Thanks MaryF,

I am based in East London. I haven't been assigned to a specialist yet, i was just told to contact my GP as soon as i found out i was pregnant. Hopefully i will know more when i attend my appointment tomorrow.

I was diagnosed at Royal London Hospital just over a month ago so i haven't had any contact with my GP as yet as i didn't expect to fall so soon after diagnosis!

MaryF profile image
MaryFAdministrator in reply toMy4angels

Hi get your GP to look at your Thyroid, Vit D, and B12 as an extra precaution, they will test you, and see if you can get a referral to Professor B Hunt's team at St Thomas' Hospital. You will see over on the right hand side of the forum our pinned posts, and specialists are under that section, make sure your GP knows that your referral needs to be urgent. MaryF

My4angels profile image
My4angels in reply toMaryF

I will do and thank you for the advice. I actually work right opposite St. Thomas' hospital so that would be perfect for me.

Saralmac profile image
Saralmac

Hi, congratulations! I was diagnosed after my second stillborn son. I also had a stroke so was on warfarin and 81 mg aspirin pre conception. We did fertility treatment (well started anyways) so we knew at just over 3 weeks. I was immidiatly given vitamin k dose and switched to lwmh injections. Saw a maternal fetal medicine dr ( for high risk pregnancy) and maternal medicine dr as well as maternal thrombosis dr for my pregnancy. I was induced at 36 weeks. Had growth scans every two weeks and nst every week from about 20 weeks forward. Had a healthy boy at the end!

My4angels profile image
My4angels in reply toSaralmac

Thank you for sharing your story with me. I'm so happy to read you have a healthy little boy. I'm so sorry about your losses.

I just don't have faith in the NHS unfortunately as there just doesn't seem to be any ergency, perhaps I'm just unlucky where I live. I don't feel I am being taken seriously by my surgery. The nurse I saw this morning had no idea what to do so had to call someone in to advise her. The receptionist was rude when I tried to tell her why I couldn't wait 2 weeks for an appointment.

As soon as I'm started on heparin I will feel so much better and will start to enjoy the pregnancy. I just can't relax or believe it's all going to be ok yet.

Oliversmum profile image
Oliversmum

Congratulations!!!!

Hope it all goes well for you.

I would say - remind every medical person you encounter that you have aps and what that means. Hope you got to see your gp asap - you could always explain your situation to the receptionist and they might just fit u in.

Best of luck xxxx

My4angels profile image
My4angels in reply toOliversmum

Thank you 😊

I saw the emergency nurse practitioner this morning who has referred to me to my local hospital as high risk. I wanted to see my GP as he knows everything I've been through but couldn't get an appointment. As for the receptionist, boy was she rude when I began to tell her why I couldn't wait 2 weeks for an appointment! I had to go to the surgery at 8am to get a slot. The system is ridiculous.

Thanks for the advice, I will defiantly mention it whenever I can xxx

HollyHeski profile image
HollyHeskiAdministrator in reply toMy4angels

Hi, glad youre going to be looked after, keep in touch x

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