To all pregnant ladies....: I just... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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To all pregnant ladies....

Maybells profile image
12 Replies

I just wondered how you're all getting on?

I'm currently in my 19th week and so far so good. My heparin levels have remained 'perfect' since injecting, I have my 20 week scan scheduled with fetal medicine this Friday and then further scans at 28,32 and 36 weeks. I feel like I've struck gold with my heamotolgist as he's tried to help me with all aspects of the pregnancy, treating me as a whole as it were and takes everything I say seriously. After four recurrent miscarriages since my daughter three years ago, I can't help but be super excited :) it seems that all I'm dealing with is the normal pregnancy woes ( I've had hyperemesis and now spd).

Anyways, I thought it would be nice to check in.

Helen

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Maybells profile image
Maybells
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12 Replies
Flyingdutchie profile image
Flyingdutchie

Hi Helen, good to hear all is going well. I'm in my 22nd week and I just swapped hospitals because I was so unhappy with the care they gave me. I was with an academic hospital and the team there didn't think I had APS since I had only 2 miscarriages although they agreed funnily enough to put my on asperin and heparin they treated me as a normal pregnancy).

Yesterday I went back to the local hospital that diagnosed me in January just before I became pregnant and it was such a relief yesterday to be taken seriously, to be listened to. The gyna thought it strange the other hospital didnt follow the protocol, 2 miscarriages and the bloodtests should be enough to be labelled APS. They're happy to take me on and give me the additional check ups pregnant women with APS get. I now have growth scans planned at 27, 30 and 33 weeks and already discussed 2 options for a birth plan. I feel much more comfortable now! Also, the gyna yesterday did a quick scan (also to reassure me) and the growth of the baby is totally on schedule, hurray!

I feel much more on ease now and start to feel confident that there really is a baby on its way.

Good luck with the rest of the pregnancy Helen! Keep us posted

Marije

jessielou profile image
jessielou in reply toFlyingdutchie

Hi marije

So pleased for you hon, glad you're getting better help from medical team. Thinking of you, glad little one is growing well,

Gentle hugs love Sheena xxxxx :-) :-) :-)

Annslack profile image
Annslack

So pleased to hear that you are both doing well and getting good care even throughout had to move to get it Marije . It will be good to have the scans and keep a close eye on your babies' progress. The previous hospital seem to be using classification criteria instead of diagnostic criteria. Apparently classification criteria is used to be standardize the patients involved in researched that lists three miscarriages. The doctors in London have explained this at the patients meeting and in published discussion papers. It would be good if you felt up to it to write to them explain this becausethey will put other women through unnecessary suffering through their lack of understanding.

Do keep in touch its great to hearcpositive news.Ann

MJLS profile image
MJLS

So glad your doing great. I'm 13 weeks and 2 day pregnant now and fingers crossed everything is going well. I've had 4 scans every couple of weeks through a high risk pregnancy unit. They all seem to know about hughes which has put my mind at rest.

It's also great to hear of the sucess that other ladies on here are having.

MJ xx

jessielou profile image
jessielou in reply toMJLS

Hi MJ

Good to hear how you're getting on, so pleased for you, I'm glad you have a good team round you! Thinking of you!

Gentle hugs love Sheena xxxxx :-) :-) :-)

Congratulations on doing so well Maybells.

As APSNot said, please do email me the name of your wonderful haematologist so I can add them to our APS specialists database: hughes-syndrome.org/self-he....

I always write personally to the specialists to make sure they are happy to be added, so please don't worry I would add them without their permission. You'll be helping other people in the future so we would appreciate your help with this. I can be emailed at kate.hindle@hughes-syndrome.org.

Wishing you all the very best for the rest of your pregnancy :) x

Lindvig profile image
Lindvig

Hi Helen

Congratulations on your pregnancy at getting for far along :) Its nice to hear that even though you had miscarriges you have a daughter now :)

I am 6 weeks now and Im soooo nervous for my scan on thursday. I fearing the worst :(

Im getting injections too. How much heparin do you get?

jessielou profile image
jessielou in reply toLindvig

Hi lindvig,

I hope all ok!

Gentle hugs love Sheena xxxxx :-) :-) :-)

Maybells profile image
Maybells in reply toLindvig

Thank you :) I take 0.2mil per day of Fragmin. How did everything go with your scan?

jessielou profile image
jessielou

Hi Maybells,

I'm so pleased for you, great that you have a knowledgeable and understanding haematologist, good to hear you're doing so well.

I'm thinking of you, positive thoughts flying your way,do keep us updated,

Gentle hugs love Sheena xxxxx :-) :-) :-)

Maybells profile image
Maybells

Thank you for all your kind responses. Our scan couldn't have gone better yesterday! Held with fetal medicine, everything was checked. Baby is perfect, placenta is working properly, blood flow is spot on and on top of everything else, we found out we're having a little girl! It's all feeling very real now I'm simply very very happy.

jjandsj profile image
jjandsj

My Granddaughter has just found out she is Pregnant....baby no.3. the GP's have put her on Heprin and Aspirin, she has been bleeding for about 4 days but so far the baby is hanging on and not letting go....they never put her on Aspirin the last two times....could it be causing the bleeding......

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