Pre Eclampsia support

For Women & their families who have suffered with Pre Eclampsia, Eclampsia, HELLP syndrome, Pregnancy induced hypertension (PIH) and related conditions.
 
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 Newbie trying for baby No2

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AmandaLily'smum
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PostSubject: Newbie trying for baby No2   Fri 05 Mar 2010, 7:40 pm

I had a pre-pregnancy consultants appointment today and I was very disappointed to say the least. Lily was born November 08 at 30+6 at 2lbs 3oz. I had pre-eclampsia and IUGR. Today I was told I didnt have pre-eclampsia but pregnancy enduced hypertention even though it said PE on my discharge notes. I delivered in a different hospital, I tried to get the notes but they were not forwarded in time for today. I didnt get to see the consultant who cared for me originally and no explaination was given. I tried to ask about asprin but I am confused as to the answer I was given. However I have not been instructed to take it. I was told he could not predict what would happen we would have to wait and see, I would have consultant led care and if I showed signs again they may have to deliver the baby even sooner than the first?? I thought they could get you a little further on as PE is less severe the 2nd time round. Anyway needless to say I am not happy at all. Any thoughts on what I can do now? I have been discharged from hospital care. He also did not mention getting any bloods done or asking for the report on the placenta. Any comments would be much appreciated x
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emmie
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PostSubject: Re: Newbie trying for baby No2   Fri 05 Mar 2010, 8:36 pm

Welcome to the forums.

Sorry to hear that you're having so much trouble getting answers and informations from your Consultant, I think its shocking the way that he's treating you!

Don't know how much this will help, but my own Consultant told me that PE nearly always happens later in subsequent pregnancies and they expect it to be less severe (although there are exceptions, a lot of which depends on your own medical history).

I, personally, underwent a series of tests to find out if I had any underling issues that could be treated next time. These included tests for blood clotting issues, cardiolipin antibodies, lupus, kidney scans and liver tests (although I did have HELLP as well). This should be done for you and if the Consultant won't do it, maybe you could ask your GP?

If I was in your position I think I would ask my GP to refer me to another Consultant or ask Liz to recommend a Consultant near you who specialises in PE.

Good luck and keep fighting for the care that you SHOULD be given.

Emma xx
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Nicki D
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PostSubject: Re: Newbie trying for baby No2   Fri 05 Mar 2010, 9:06 pm

Hi AmandaLily's mum,

I have to say that I CAN believe how badly your appointment went today! My first appointment with a consultant (the one who delivered my little boy at 33 weeks) to discuss a second pregnancy went along the lines of: It's not that serious, I guess if you want to take aspirin you can, we probably won't do any additional monitoring, but if you insist on it, you can maybe have a couple of extra scans...

Then, a couple of months afterwards, I saw a consultant who specialises in PE and related disorders, and it was a completely different story! She did a load of blood tests, she talked me through the likelihood of HELLP happening again, she suggested that aspirin would be a good idea, additional scans, a doppler scan, and I felt so much more reassured.

You have the right to be taken seriously, and to be looked after properly, and to demand to see someone who specialises in PE - you will be considered high risk for another pregnancy (not trying to scare you here, more pointing out that you need a true specialist).

Pregnancy Induced Hypertension IS pre-eclampsia - it's the same thing by a different name!

Not even the best specialist in the world can tell you whether or not PE will happen again (hopefully, you'll have read some of the great stories of ladies here who have gone on to have PE free second pregnancies), but having tests may possibly help to indicate the likelihood, if you have an underlying disorder that will make you more prone to it.

I'm sure Liz will be able to help you find a specialist in your area, and you should go back to your GP and ask for a referral - if they're reluctant, you can wave the precog guidelines at them! It really is your right to be looked after by the most appropriate person.

Good luck with it all.

Nicki x
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AmandaLily'smum
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PostSubject: thank you   Fri 05 Mar 2010, 11:09 pm

Thank you for your replies. The more I think about it the more appalled I am. I should have asked to see the consultant I had booked to see (she cared for me before Lily was born). I dont know why I had to see someone else on the day because the consultant was in the same department?? I delivered at a hospital about 25 miles from home (no cots at my local NICU) and there is a significant problem getting my notes. I did ring the hospital and try to get them in time for this appointment, they said they wouldnt send them to me as I was not entitled to them and the local hospital needed to write to request them. I tried to prempt this by asking the consultants secretary to request them. (they still didnt send them in time for the appointment).
I have since read the PRECOG guidelines and am even more astonished. I booked with a distolic reading of 92 and was told the electronic monitors always read high. At my 20 week scan and appointment I complained about flashing lights and was told to visit the opticians. I also asked about blood pressure monitoring after my daughter was born, this was because if I lay down it seemed to give lower readings. I was told laying down did not affect the readings!
I am speaking to my GP on Tuesday and I will try to get re referred, I was happy with my pre-delivery care at the local hospital. Alternatively I am researching experts, i think the nearest is in Leeds as I live in Lancashire.
Regards Amanda
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Liz Pidgley
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PostSubject: Re: Newbie trying for baby No2   Fri 05 Mar 2010, 11:10 pm

Hi AmandaLilys mum,

Welcome to the site.

Sadly your experience of a consultant pre-conception appointment is not unfamiliar to lots of the ladies here, but it is also why this community exists.
There is so much mis management of this condition it is the fundemental reason why the PRECOG guidelines were written.
The care plan you were offered seems to be on a 'hope & a prayer' that the condition will not reccur and we will 'manage' it if it does.
This is simply not good enough and certainly not consistent wit NICE or PRECOG guidelines.

I would strongly suggest you speak to your GP and ask to be referred to someone who a) knows what they are talking about and is prepared to be questioned and give honest open answers and b) has an ounce of humanity!

If you PM me where you are in the UK, I can send you a list of experts nearest to you who have all done extended research into the condition.

The honest answer to protect yourself & baby next time round is to be so knowledgable you feel confident enough to raise your concerns and not be fobbed off. You know your body best & if you listen to it carefully it will tell you what it needs.

PIH is not the same as pre-eclampsia, although they are linked. To have pre-eclampsia there is raised blood pressure and protien in the urine. It is entirely possible to have PIH and it not develop into PE...but it is generally speaking a good pre-cursor. Much of this comes dow to the diagnosis because, as many will know here, HELLP which is a complication of PE can be the first sign anything is amiss in the first place.

I am happy to talk through your notes with you if it helps?

Bottom line? You would greatly benefit from a second opinion.

I hope this helps & that your daughter is fit and well.

Best Wishes
Liz

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Every Woman is entitled to understand what happened in her pregnancy when pre eclampsia strikes. I hope to be able to support that process.
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tomsmammy
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PostSubject: Re: Newbie trying for baby No2   Sat 17 Apr 2010, 4:20 pm

hi amandalily's mum, i'm in the same boat as yourself and also a newbie to the site. its taken me 6 years from the birth of my little boy to bring myself to even consider pregnancy again, and on the grand scale of thing and reading everyone else's story, i was fairly "lucky" with my PE, even if i did receive appauling care from the unit i was moved to to deliver, as in your case there were no nnu cots. but that still doesnt help my stomach knotting everytime i've thought that sometime soon i may well be pregnant again. i've got questions rolling around in my head and discussed with a gp in my practice a referral to on obs consultant pre-pregnancy, he didnt feel it was necassary and suggested just booking in early with my MW when i get a postive test, even thou there's a letter on my notes and i have a copy, outlining how severe my PE was and that the consultant would be happy to see us if we decided to ttc again. that consultant has now retired unfortunalty and as far as i'm aware non of my local consultants now specialise in PE. i'm a bit lost and thinking is just jumping in with oth feet the only way to go!!
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