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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 Thinking of TTC but afraid, want to prepare...?

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KookyK
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PostSubject: Thinking of TTC but afraid, want to prepare...?   Thu 10 May 2012, 9:07 pm

Hi!

In my last pg I started feeling unwell from about 32 weeks. This fell over xmas/new year so I didn't actually see anyone until 35 weeks. I was 50/50 consultant/midwife appts becuase of (controlled) underactive thyroid. When I was seen at 35 weeks I felt stressed, exhausted, fluey etc and had lots of pressure at work (my last week there!). My BP was v v high (I think 140/100) and +1 protein. I was told PE and said I'd prob deliver 1 week later at 36 weeks. I attended hospital every few days (stressful in itself - parking etc!) and was told by one doctor I didn't have PE anymore (!) and next appt delayed for 4 days. When I returned there was more concern ad I was admitted at 36 weeks. I started on BP meds (mostly labetalol although one night they kept giving me lots of different tablets).

I started feeling a lot worse at about 36+4. Stressed, exhausted, slightly crazy tbh. I was induced at 37 weeks. That day and the day before I now know I become a lot sicker, protein increased (+2, +3), BP not well controlled. I was v disorientated, started being violently sick on the day of labour. I was given mag sulf drip and epidural. I felt out of it and dreadful all day. I gave birth amazingly without too many issues that evening. DD at 37 weeks was 5lb 8oz. We stayed in 1 week and she was fine. I was on labetalol for 6 weeks. I also had retained placenta and was readmitted after 2 weeks (TBH it wouldn't come out at birth but they just tugged and tugged and commented that it was 'ragged' but then seemed to forget).

I thought about it all and was upset by it for a few months post birth but then really put it out of my mind. But now my partner and I would like to have another child. I really want to do this but I am terrified. Last time I got v v scared of BP monitors and was very anxious (scared of fitting) whihc I think maybe made my BP worse. I know so much - too much? - about PE that I'm scared of all the worse case scenarios (much worse than mine). I'm also v scared of the way I felt on the day of DD's delivery it was truly awful.

I've taken some action before TTCing. I saw my doctor who referred me for counselling (I'd love some coping strategies and can't open up to my parents as they are scared/horrified at me TTCing, whereas my partner doesn't think I was that ill and maybe am overreacting). The counsellor did a phone assessment of me. TBH I'm not sure as I am right now (i.e. not preg therefore not freaking out) they'll consider me high priority but we'll see.

Doctor wouldn't refer me to my consultant but I wrote to the consultant who delivered DD and she invited me in. Interesting chat - she said she was surprised at how quickly I changed from not too ill to very unwell indeed with DD and with hindsight (as I felt) should've got DD out a couple of days earlier. She said in the event of the same they'd induce at the 1st sign of things worsening. I tried to find out why they didn't do a C section as that day was psychologically and phsyically terrifying. She said about risk of bleeding/clotting problems however my bloods were actually always fine. I said if I started to feel the way I felt on my labour day in a future pg I'd really wish to have a section. She didn't say no but you could tell wasn't keen. She said it wasn't necessary to do any blood tests prior to getting pg again. She said baby aspiriin from 7/8 weeks and doppler scan at 23 weeks. She seemed to think 10% chance of PE again but when I read about it I think it might be higher and would like to know odds for my actual situations. When I said about feeling odd/spacey/a bit mad and end of pg/labour she said it was probably my brain swelling from the high BP which afterwards freaked me out.

So I keep putting off TTCing because I'm so scared but I'd love a sibling for DD and for our family and for me. I don't know how to get past that but I want to. I wonder if therei s a 2nd opinion I can get from an expert or other consultant about risks and preventative treatment and what they'd do in the event of the same happening.

any ideas, adviced etc welcomed! Thanks x

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Liz Pidgley
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PostSubject: Re: Thinking of TTC but afraid, want to prepare...?   Wed 16 May 2012, 1:04 pm

Hi Kooky,

Welcome to the site Im glad you found us - I hope that you will find the information & support you need here.

Also many congratulations on the birth of your daughter.

Pre-eclampsia by its very name translates to 'bolt from the blue' so it is not unsuprising you became so unwell so quickly.

Im glad you had the opportunity to talk through your pregnancy with your consultant. Did you also obtain a copy of your notes? Often they are so useful in pin pointing the turning point in a pregancy and can help to plan for a subsequent one.

Given your history, I would strongly suggest seeing a pre-eclampsia specialist prior to conception. This way, you have the opinion of an expert, not someone who is simply well meaning. If you let me know what area of the UK you are (you can PM me if you prefer) I can forward you some names & addresses of specialists close to you.
For most part, they do like a GP referral, however are well aware of the hurdles that need to be overcome to get them so you can also self refer in many cases - and with out charge.

Embarking on a second pregnancy is scary - I feel that PE is a thief - it robs us of the dreams, the innocence and the beauty of pregnancy. Any subsequent one there seems to be the worry of the 'time bomb' going off again.
You are not alone with this worry. But there are things that can be done to minimise its impact.

The first of which you are already doing - arm yourself with as much knowledge as you can. Knowledge against this evil condition is the power against it.

I hope this helps Kooky & I look forward to talking to you soon.

Warm wishes
Liz

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KookyK
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PostSubject: Re: Thinking of TTC but afraid, want to prepare...?   Wed 16 May 2012, 9:21 pm

Thank you so much for your reply, Liz. I'm planning to be ultra informed, you are right!

I'd love to know of PE experts in my area - thank you for your offer to give me some info. I live in Chessington, between Kingston-upon-Thames and Epsom, Surrey.

Thanks again for your help and I look forward to finding out about my nearest PE expert. Very Happy

PS - I did ask about seeing my notes when I saw my consultant. I'm waiting to get the form. I know I started feeling ill at about 32-33 weeks. Speaking to a work colleague I think I was working at 1000 miles an hour and putting a lot on myself and when I stopped at Xmas I suddenly felt it. With hindsight I shouldn't have gone back to work after Xmas (it was only 2 weeks but I had a lot given to me to do and felt stressed by that) as I got a lot more symptoms and was picked up upon at that point. It was mild PE though until 2 days before DD's birth. I had been in hospital during that time and sleep deprivation felt like it was taking its toll along with anxiety (and looking back loneliness as I was in a 2 person ward which was consdtantly changing then a private room) didn't help. I knew I was feeling worse 2 days beforehand and my protein/BP got worse then too. The consultant said she would, if this happened again, induce as soon as I showed any signs of getting worse.

As I think, I'm sort of thinking I'd want a caesarian unless I had no signs of PE. I'm very afraid of labouring with mag sulf and of fitting (which I know didn't happen to me). I know 75% fits happen during or after labour and due to my fear of fitting I sort of want a section before I go into labour unless I have no signs of PE. I'm not sure if this is a good idea from other perspectives but it seems to be from mine!
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Liz Pidgley
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PostSubject: Re: Thinking of TTC but afraid, want to prepare...?   Thu 31 May 2012, 2:00 pm

Hi Kooky,

I have PMd you!

Please dont feel like your working at 1000 miles per hour in some way contributed to the PE - it didnt.
This was decided at conception. How rough you felt was partly because of the nature of the condition and partly because the care you received seem slow off the mark. Neither of which is your fault.

The 'what ifs' are such big sticks we find to beat ourselves with after PE which is why PE often hits hardest to the first time Mums who have no other knowledge to use against it and we trust our care givers.

Talk to the experts and look at your history - together you can agree a sound care package if you decide on a sibling for your daughter that can be written as instructions for your local provider to follow or if you decide to stay in the experts care - a check list for you to follow!

Keep in touch and let me know how you get on.

Best wishes
Liz

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