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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lesleywhite
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PostSubject: consultant appointment   Tue 30 Nov 2010, 10:10 pm

hi, I've got a consultant appointment this week to talk about possibly going ahead with another pregnancy.

In my first pregnancy I had severe, early-onset asymptomatic pre-eclampsia, which resulted in my son being born at 29 weeks. I then developed HELLP syndrome post-natally. I had no underlying conditions eg hypertension, family history etc but was 36 years old when I had him.

He had severe IUGR as a result of this and spent 95 days in hospital before coming home on oxygen for 6 months. He has never caught up size-wise, and has feeding issues and vomiting episodes related to his prematurity. It's been a long, hard journey for us, and it's still ongoing.

Age-wise, I now need to consider a further pregnancy (or not!!).

I would be really interested to hear from anyone who has had such an appointment, particularly if there's any investigations I should be having, or questions worth asking. Having read through the NICE guidance, I'm really concerned about recurrance rates.

Any advice or information appreciated

Thanks
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Liz Pidgley
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PostSubject: Re: consultant appointment   Wed 01 Dec 2010, 1:29 pm

Hi Lesley,

Welcome to the site. I hope we can offer you some support whilst going through your decision making.

A specialist appointment is a really useful discussion to have when planning (or not, as the case might be) another pregnancy.
I have worked alongside the majority of our specialists for nearly 11 years and had a pre-conception appointment with one of them but am continually in awe of the skill and compassion they always show.
Personally I found just going over my first pregnancy & looking for the markers that could maybe have been picked up & properly mananged a really comforting thing. When planning where to go next its really important to speak to someone who is well qualified to give you an opinion on what went wrong, why & what could be done about it.
Im sure many of the ladies here would tell you something similar.

You are right in saying the occurance of PE is higher simply because you have had it before but it does tend to be later in the pregnancy & less severe. Most part because of your own knowledge of how pregnancy shouldnt feel & what your care package should be. If its picked up early, to a point PE can be managed and so the outcome is often less traumatic.

When going through another pregnancy its really important to look after the whole you, not just the pregnant you. Many women will say you are simply waiting for the 'time bomb' to go off again and that constant waiting and roller coaster of emotion is actually one of the hardest things about another pregnancy.
PE robs us of the dreams we had for pregnancy & childbirth and steals our control. An appointment with an expert helps to hand you back that control which is priceless.

Im sure the ladies here will add there comments, but if you want to PM me where you are in the UK I am happy to send you the names of your nearest experts.
You could also call me if you want to talk this through in more specific detail? My number is 0845 241 1989 (11-3pm Mon-Fri)

I hope this helps.
Warm 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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lesleywhite
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PostSubject: Re: consultant appointment   Wed 01 Dec 2010, 8:46 pm

hi Liz, thanks so much for your reply, it's always helpful to "talk" to someone who understands.

My problem is that there's no specialist PE consultant in the city where I live (Edinburgh) - if pregnant again I would be managed by a general consultant obstetrician as part of the high-risk pregnancy clinic in the specialist regional centre hospital. The nearest PE specialist is in Glasgow - too far away to realistically manage a pregnancy, and the consultant doesn't do private referrals. I'll try to call you tomorrow but my appointment is supposedly at 12 - but the weather here is so awful I don't if I can make it!

Anwyay, I'm left having a discussion with a generalist obstetrician about the risks. I'm also a healthcare professional and have many questions of my own eg about placental analysis, clotting tests etc - I would like to be forearmed with as much information as possible for the appointment. I'll have a good read at the evidence base in NICE again, but if anyone has information about what investigations have been performed on them - then that would be appreciated

Thanks

Lesley
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emmie
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PostSubject: Re: consultant appointment   Thu 02 Dec 2010, 10:46 am

Hi Lesley,

Welcome to the forum.

When I lost my little boy I had a meeting with my Consultant who went through the placenta results, arranged lots of tests to try to determine if I had 'sticky blood', I had kidney scans to check I didn't have an underlying problem which could have contributed to my early onset pre e and HELLP and I also had urine analysed. In the appointment we also went through my risk for a future pregnancy and how the pregnancy would be managed (seen at least once a week, scans every two-four weeks, an umbilical artery doppler scan at 23 weeks to check for notching (if this was found my asprin would have been upped). My Consultant is also in very close contact with a pre e expert who is helping manage my care.

I am now 30 weeks and 5 days pregnant after having pre e at 24 weeks in my last pregnancy and I know I'm not safe yet but managing to feel a lot better about the whole thing. There are a lot of wonderful ladies on this website and their stories, support and encouragement gave me the confidence to try again and I'm so glad I have!!

Good luck with whatever you decide to do
Emma x
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lesleywhite
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PostSubject: Re: consultant appointment   Thu 02 Dec 2010, 8:29 pm

hi Emma - thanks so much for taking the time to reply - it's great to hear stories like yours, where you've gone by your previous gestation and are keeping well - hoping your baby can stay put for another 9 weeks or so!

The consultant appointment today went well, she feels my future risk would be around 30%, which is better than I was expecting. There was no placental analysis done previously, but I did ask to be screened for thrombophilias (clotting disorders) which was done today - I expect the results will come in the New Year. The plan would be to take aspirin 75mg at the positive pregnancy test (not preconceptionally as apparently this is associated with increased miscarriage risk)

I also have to try and lose around 1/2 stone and get back to the weight I was before pregnancy, and try to get to the gym a bit more.

There was the usual expected stuff about the high risk clinic, growth scans etc.

She did say that it might not be realistic to aim for full-term as a goal in itself, but to get further along this time. Not sure I'll ever let go of the full-term dream, but it's maybe more pragmatic not too.

So my partner and I will have yet another discussion, and I'll try not to eat so much chocolate!
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lesleywhite
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PostSubject: Re: consultant appointment   Thu 27 Jan 2011, 2:08 pm

hi everyone, just a further update.

I phoned the consultant last week for the results of the thromobophilia screen, and much to both our surpise they have come back positive - anticardioliptin M (and to a lesser extent A) and one with lupus in the title too - sorry can't remember.

They are only marginally raised, but I have to have the sample repeated & I should know in the next few weeks whether it's diagnostic or not. If positive again, she'll speak to a Haematologist, but I understand the tests can be quite fickle.

Of course I've been googling and coming up with Hughes Syndrome, and it does explain a lot. But it could put a whole new angle on things, and I'm even more panicky at the thought of getting pregnant again.

If anyone's had a similar experience, or got a bit of advice I'd be grateful to hear about it. It might just be that we count our blessings, as we have a wonderful little boy, who by rights shouldn't really be here..................
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