anyone out there with antiphospholipid syndrome?

[DancingCat]

Hello ladies, wondered if there was anyone out there with APS like me? I'm 39 and also have type 2 diabetes. Am on 75mg aspirin, 50 mg clexane twice daily, and 500mg metformin, and folic acid. My different consultants don't seem to talk to (or trust) one another. although only 21 weeks (today) no-one seems to want to talk delivery with me despite me asking. Had anomaly scan on Friday - baby is doing fine. As this is our first baby I'm nervous enough anyway, and with my conditions I'm getting a little stressed. Any advice would be appreciated :)

I have a disorder which is treated in a similar way and I'm almost 21 weeks pregnant with twins, and im 39. I also have an 18 mth old boy. I'm on 40mg clexane, 75mg aspirin, b12 and iron supplements and was also on 900mg a day of progesterone support and dexamethasone for the first trim. I was under the care of a gynae with a special interest in immune related disorders and now my care has been transferred back to an nhs obs and a cons haematologist. What are the specialities if your consultants?
My understanding is that things progress as normal but being on clexane complicates things because if you go into labour you're more likely to bleed, and they can't give you an epidural because if a risk of bleeding into the spine. As a result of all this I asked for a c section which was agreed. As it happened I had placenta précis so it was academic anyway.

Have you looked on fertilityfriends.co.uk as their forum has a bit just for APLA/lupus/immuno type ladies. Hope that helps.

Thanks BagofHolly :)

I am seeing prof Hunt at St Thomas' about the APS, but my primary care is at the Conquest in Hastings under the care of the high-risk obstetrician Mr Zaidi who I haven't yet seen. I'm seeing an endocrinologist, haemotologist, obstetrician linked to the diabetes clinic, cardiologist, anaesthetist, community midwife, high-risk midwife and consultant sonographer (2 of them).

The diabetes team know little about APS and see diabetes as the priority - they're the people I see most. Prof Hunt is the expert in APS however she is not guiding my care other than selecting the appropriate anti-coagulation. I'm sure its just her manner but she's not encouraging - when I saw her last she said 'didn't even think you were still pregnant because you don't weigh much' - I've put almost 5kg on since getting pregnant!! - and then said when I asked about delivery 'well you could still lose it at 18 weeks or later' Like I don't know that - but surely some support wouldn't go amiss.

The anaesthetist was great, despite the fact that the diabetes obstetrician had referred me to him saying 'this lady wants a C section' - I hadn't said that, I simply wanted to discuss the options. He said they will give an epidural as long as I cease the clexane 12 hours before its administration, though he would prefer a spinal block as less chance of a spinal bleed with that - I liked him, he wasn't expressing a definitive view but gave me confidence that they would go with my preference. And that I'll be looked after.

My problem is that no-one wants to discuss whether a c section will be better or vaginal birth (bearing in mind the risks of bleeding, clotting, not to mention heart and other issues with me) and the ob that I see most (in the diabetes clinic) just said I'll be induced early due to diabetes. I don't want to be induced if I can avoid it. I just want someone to discuss the pros and cons of labour or c section. Prof Hunt wouldn't discuss delivery until the 'viability' of my baby was established - I see her again in a few weeks, my 20 week scan was perfect so hopefully she'll be more forthcoming this time.

I feel that I can't ask for a c section even if that's what I decide as the local obs is clearly against it - yet I have two serious conditions, one which could mean a big baby, one which is likely to cause pre-term birth and a small baby, plus I'm a very teeny mum (was only 48kg before getting pregnant). I feel that I have no control and despite being a very assertive woman I'm getting really stressed because it seems to be more about them protecting their own backs than about protecting me and my little one.

Maybe I'm being over sensitive but I feel I'm being judged for even wanting to talk about c section, even though I haven't yet made up my mind. My GP is great and am sure she would intervene if I demanded it, but when I have made a fuss I just seem to get an even worse attitude from the diabetic obs. I'm doing everything right, monitoring my blood sugars, religiously taking my meds, keeping active, eating a healthy diet etc but nothing seems to make any difference.

God - so sorry to go on, but I feel I want to shake them - and the stress is making what should be the best expereince of my life into the most depressing and stressful one which effects me and my hubby very badly.

Sorry, didn't mean to rant! sounds like your team are better informed and more supportive of your views. Best of luck :)

Flipping heck, I'm not surprised you're stressed! What makes you think that your obs at the Conquest is against you having a section? As for Prof Hunt, how incredibly unprofessional and insensitive! Can you ask to see another haematologist, preferably at the Conquest or is there a reason you've been referred to St. Thomas's?
The way I look at it is this - your diabetes is less of a pressing issue than your clotting and being on clexane, so I think you have to look at that as a priority. As for feeling judged for wanting a section, to be honest I think that's what you'll end up with anyway. When I said I wanted one, both my haem and obs did all but breathe a sigh of relief as they said it could all be timed and controlled, and there would be far less chance of the clexane becoming an issue. And if anyone else makes a judgement about you asking, that's their problem, not yours! You have the right to deliver your baby however the hell you choose and unless someone has a valid clinical opinion, then they can shut it!! You don't need your current obs' personal approval for anything, you can either show a clinical need, or you can't! Try not to let their attitude bother you. Personally I'd go and see the highrisk midwife, tell her how you feel, esp about trhe cons and say you want a c section, NOT an induction and you want to make sure that your notes reflect that you're making an informed choice.
It might well be though, that all of this will happen anyway - I didn't have proper chats about delivery until I was about 34 weeks last time. What happened when you had your first child?

Thanks so much - you've made me feel so much better, felt I was going slightly mad!! This is our first baby!
I'll talk to Sabina (the high risk mid wife) when I have my 24 week scan - she's been great so far but I only get chance to see her fleetingly at the scans.

I thought they'd be pushing me for a section which I think is why I've been so perturbed by their attitude.
Thanks again for being so kind. Best of luck with your twins :) xx

I have had 4 sets of inconclusive blood clotting tests but am on aspirin. Will have more tests done tomorrow.

Dancingcat - I would be v careful mentioning the names of your medical professionals in case they google and decide they don't like what you have written about them. Hope you don't mind me saying.

sh77, you're absolutely right, I probably shouldn't. However, they shouldn't say if they don't want me to react :)

hope you get some answers to your clotting issues, good luck :)