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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Posts : 10
Join date : 2008-05-25

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PostSubject: Our Story   Our Story EmptyTue 27 May 2008, 4:10 pm

I'm going to try and keep this brief as Orla is desperate to get on the PC!

I was 25 weeks pregnant when Orla was born. I hadn't felt right for a couple of weeks and I was dreadfully swollen but as I'd seen my GP about the swelling when I was 22 weeks pregnant and had been told "it's normal" I just assumed it was normal.

I woke up on the saturday morning and felt as if the top of my head had been blown off, I checked my copy of "Emma's Diary" and a pregnancy book and the vague reference to PE all related to it being much further on in pregnancy. Once I was up and dressed the headache wore off a bit but it was still there. By mid morning I had pain under my ribs which I thought was indigestion. I went to the local pharmacy, explained my symptoms and was given gaviscon, which obviously didn't work.

The Sunday morning the headache again woke me up and was even worse than before. I remember walking downstairs and seeing myself in the mirror at the bottom of the stairs and thought to myself "My god, if I get any bigger I'm going to burst". The swelling in my face had got worse over night and I really did feel awful.

I rang the out of hours surgery, got an appointment and duly went off with my hubby, my notes and a very dark looking wee sample. After a quick BP and protein check, the GP sent me to hospital "as a precaution" - little did we know this really meant "don't panic until you get there".

15 minutes after arriving at the maternity unit I was told the baby wasn't an option and that they had to deliver the baby asap to save me. Thankfully the lovely midwife jabbed me with steriods before the dr's could say no and once the horrible magnesium sulphate was on board I stabilised enough to give me and our baby 24 hours and another dose of steriods.

Much of the night is a blur, I remember praying a lot, trying hard not to look at all the term baby equipment surrounding me, trying not to scream every 5 minutes when the BP machine took its reading on my bruised and swollen arm and being completely terrified.

I was taken down for a C-Section around 3pm on the Monday, the epidural took over an hour as I was so swollen the fluid kept pushing the needle out but eventually I was physically numb (emotionally I'd been numb for what felt like days!) and Orla was born screaming, much to everyone's surprise.

She was 1lb 8oz of perfection!

Thankfully and amazingly she had a very smooth journey through NICU, even though we prepared ourselves for the worst every day and she came home on day 88 weighing 4lb 15oz and we've never looked back.

She is now a very lively 4 year old who loves nursery and can't wait to start school in September. If you looked at her nursery class she is one of the last ones you'd pick out as being an ex-prem and she is as bright as a button and as tough as old boots!

We think she may need an operation on a tight tendon in her foot but it's not something we're worried about. We still count our blessings every day and wonder how we all managed to come out of her horrific start so well.

My hubby would love more children, he'd happily have 6 but understandably I have my reservations. I went to see my GP last October to ask for a referral to a specialist and he refused! That started a very long and frustrating 6 months and counting and we're still no further forward.

I was given a choose and book appointment with a consultant at my local hospital, when I tried to book I found I couldn't as I'm not pregnant and therefore can't see a consultant. I had to take a general gynae appointment and in fairness did see a very good registrar who was very well informed but he couldn't commit to a care plan for a future pregnancy, said ideally I should be seen by a midwife weekly from 18 weeks and when we pushed him did agree to thrombo screen blood tests being done.

A week after the appointment I received the paperwork for the blood tests, went to a blood clinic that day. The request form asked for 6 vials to be taken but only one vial was filled before the needle was pulled out and I was sent on my way, when I queried this withe the lady I was told it was enough. I then sat back and waited for the results, and waited and waited. Several phone calls and weeks later I finally got someone to listen when I explained when the bloods were taken and that I hadn't heard anything about the results and was told they would look into it.

Three days after that the registrar called me to apologize, the bloods had never been received by the lab. I was so annoyed, so angry and so frustrated. He asked me to go in to see him personally and he would take the bloods again and deliver them to the lab himself. When I went he was so apologetic but it wasn't his fault and I couldn't really give him a piece of my mind, as much as I wanted to and I don't think it would have helped any way.

That was 5 weeks ago and I'm not expecting to have the results for a few more weeks yet but hopefully when they do come through I'll be able to make an informed decision on trying for another baby. Although my lack of care since October doesn't inspire much confidence. I guess I just have to take the leap and hope my caregivers are there to support me.

Anyway, I said I'd keep it brief and I haven't, opps!

Thanks for reading!

Lacey x
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Forum Friend

Posts : 37
Join date : 2008-05-27
Location : Leicestershire, UK

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PostSubject: Re: Our Story   Our Story EmptyThu 05 Jun 2008, 9:03 am

Hi Lacey,

Thanks for sharing your story. I can understand your frustration over getting a referal. I went to talk to my GP and got told that I should look PE up on the internet to find out some more information!

Hope you actually manage to get your results back this time.

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Liz Pidgley
Liz Pidgley

Posts : 702
Join date : 2008-04-23

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PostSubject: Re: Our Story   Our Story EmptyThu 05 Jun 2008, 11:35 am

Hi Lacey,

I just wanted to add, that we will be there to support you through a next pregnancy if thats what you decide! Also, your bloods, although they can take a while to get results back, this is usually due to the admin of getting them into the system. Most bloods are analysed the same day, so it might be worth starting to push for the answers now.

You also dont have to take no for an answer in regards to seeing a consultant. You can quote the PRECOG & NICE guidelines but which ever way they cut it, it is your right and they cannot deny you.
You may have to argue with the PCT to get to see an 'out of area' specialist but PALS would be able to support you with that.

You must feel at least half way reassured that you are going to get an adequate care plan. At the end of the day, your emotional health as well as your physical/pregnant health should be catered for.

Hang in there & get the answers you need!
Best Wishes

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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