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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 My story

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Carrie06
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PostSubject: My story   Thu 17 Jul 2008, 3:09 pm

Hi everyone

I've previously told my story on APEC so this is a bit of a cut and paste job!

My story started back last November when I went for my anomaly scan at around 19 wks. The size of my baby was coming up on the scan as 3-4 wks smaller than what was expected for her gestation. It was the consultant's opinion that the baby had a chromosomal disorder yet they were unable to detect any structural abnormalities on ultrasound and my amniotic fluid was normal and continued to remain normal which puzzled them. This was their position until after Christmas. As far as they were concerned, the prognosis wasn't good as I had doppler scans which showed bilateral notching of the uterine arteries and absent to reverse end diastolic flow so they didn't hold out much hope for the baby. Abnormal placentation wasn't really considered until much later which apparently caused the IUGR with subsequent PE.

With regard to BP/proteinuria checks, my BP had been 100/60 at 16 wks and had rised to 120/72 at 20 wks. At 25wks, BP was 130/85 - PE had still not been mentioned to me and it stayed around this level until mid-Jan (27wks) when I had a growth scan and it was decided to refer me to a tertiary centre (proteinuria was over 2g at this stage). I spent two weeks despairing over the state of the hospital food and generally felt fine, BP was high but stable. I had regular doppler scans and a renal scan so can't complain about the level of care I received. Even at this hospital, although I clearly had pre-eclampsia, they still felt the baby's restricted growth was due to a chromosomal disorder.

Two weeks after being admitted, on the Saturday night, I started vomiting and shaking which went on all night. Sunday morning I was brought to the delivery suite and told that they were going to stop baby's heart as my condition had deteriorated so much, my life was in danger. Luckily, my consultant was called in to do a growth scan and our little angel had grown since the previous scan. Emergency c-section was scheduled for the next day to allow steroids to work.

So, at 28+6wks, my precious little girl was delivered by emergency c-section. Alice was only 585g and admitted to NICU and fought hard for nearly 6 wks but ultimately the IUGR and prematurity were too much for her and she died in early March 08. She brought us so much joy in those weeks.

I have been told I will be referred to an obstetric physician during any future pregnancies but I fail to see how that is going to help apart from being monitored. I know that PE is a progressive illness and you can treat some of the symptoms to prevent further consequences so I would be interested if anyone has any thoughts on what can be done apart from being closely monitored and delivery of the baby when considered viable?

My thrombophilia screen was negative so no clexane for me. We were advised not to start trying again until at least 6 mths after her birth. It's now nearly 6 mths since I had Alice and the grief of losing her has been horrific, to put it mildly - for me, going through the experience of PE was nothing compared to losing my baby although I suppose it's all connected.

I have been taking folic acid and low dose aspirin for the last 3 months as advised by the consultant and as the 6 mths wait time is nearly up, we will be starting to try again in next couple of weeks. I was told the risks of developing PE again were 30-40% and because of the early onset and severity, I had a high chance of getting it again. So my husband and I are going to head down this scary path again and hope for a better outcome. Hopefully I will have some good news to report sooner rather than later.

Thanks for reading.
Carriexx
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Liz Pidgley
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PostSubject: Re: My story   Thu 17 Jul 2008, 3:25 pm

Hi Carrie,

Welcome to the site.

I am so sorry to hear of the loss of little Alice. I am sure you will treasure you memories with her forever.

Im glad you are going to see a Consultant physician & that you are already taking aspirin.

The truth is, that whatever I say cannot allay your worries for the next pregnancy, you will worry. And that normal and perfectly okay to do.
Until you baby is safely in your arms when s/he should be, then you can stop worrying PE will strike again.

Some things to think about though. Talk to your consultant about Calcium Supplements. Most Drs will say as long as you have a good dietary intake thats fine, but some specialists will say that supplementation cant hurt.

Things like frequent home monitoring might also be something thats useful to you. For some it serves to raise the anxiety, for others it is a comfort that one doesnt have to wait until another appointment. This is always in addition to professional monitoring though.

Follow your insincts, they are seldom wrong. If you feel something isnt right knock on every door until you get a conclusive answer to your worries and dont worry about being a pest.
Professionally speaking, I would rather see someone twice a day rather than miss 'the once'.
Most professionals I know would say the same.

I hope you will fiond comfort and support here. I look forward to hearing happy (if anxious) news.

Warm Wishes
Liz

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mouse
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PostSubject: Re: My story   Thu 17 Jul 2008, 8:19 pm

Carrie I'm so so sorry about Alice. I can only imagine how hard the past 8 months have been for you.
I am taking 5mg of folic acid (rather than the usual 400mcg) once a day & Calcichew twice a day, as well as low dose aspirin to reduce the risk of PET/delay it at least, so like Liz says with the earliness of onset with you it might be worth discussing with your obstetrician before starting to try again.
Would it be worth seeing the obstetric physician before you try again? I'm sure as part of the PRECOG guidelines you should be able to & it might help reassure you about the level of monitoring & what they would do IF you developed it again.
Look forward to hearing your good news soon & supporting you through every step of your pregnancy
With lots of love
Mouse xxx
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Caroline
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PostSubject: Re: My story   Fri 18 Jul 2008, 10:15 am

Carrie,

Am so sorry to hear of the loss of baby Alice.

We lost our first baby Max - also at 28 weeks in May last year. I have been lucky enough to go on and have a successful pregnancy with Max's little sister who was born 8 weeks ago. Although I did start to show mild symptoms of PE again (although at a much much later stage and far less severe) the excellent care and monitoring I was receiving enabled it to be picked up at the earliest stage possible. I hope that this gives you a bit of hope that things can be different next time round (although I never believed it either!!) and that even if PE does strike again, it doesn't have to be the worst outcome again.

I wish you lots of luck when you start trying again and hope to hear your good news soon. If you would like to chat at all please do get in touch.

Lots of love
Caroline xxxx


Last edited by Caroline on Fri 18 Jul 2008, 12:40 pm; edited 1 time in total
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Penny
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PostSubject: Re: My story   Fri 18 Jul 2008, 10:29 am

Hi Carrie,
I am so very sorry to hear of the loss of your beautiful little girl.
My story was similar to yours but started a few weeks later so i was very fortunate it led to a different outcome.
I did go onto to have another successful pe term pregnancy so i come on here to offer hope. If i can help in any way please ask.
Love Pennyx xx
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Carrie06
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PostSubject: Re: My story   Mon 21 Jul 2008, 10:40 pm

Hi everyone, thanks so much for your responses. Well since posting my story, I have found out that I am expecting.

A shock to be honest as we weren't supposed to be TTC for a couple of weeks. Clearly the practice run worked a bit too well:)
I've been taking my vits, folic acid and aspirin since beginning of May so hoping that it will help me. Seeing my GP later this week to get a referral to the hospital where I had Alice. I think my husband and I are still too stunned to be anxious but I'm sure that will come eventually. Carriexx
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Caroline
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PostSubject: Re: My story   Tue 22 Jul 2008, 10:31 am

cheers So happy to hear your great news Carrie.

Am sure you are experiencing so many mixed emotions - remember we are here to help you through it.

Lots of love
Caroline xxx
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Penny
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PostSubject: Re: My story   Tue 22 Jul 2008, 7:15 pm

Wonderful news Carrie. Smile

Like Caroline said we will be here with you all the way.

Lots of love.
Pen xxx
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mouse
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PostSubject: Re: My story   Tue 22 Jul 2008, 7:42 pm

Congrats Carrie

Laughing Laughing Laughing on the 'practice run'

Hope this pregnancy goes completely smoothly & is PE free.

Lots of love

xxx
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Liz Pidgley
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PostSubject: Re: My story   Tue 22 Jul 2008, 8:39 pm

Hi Carrie,
Many Congratulaions - we are here when you need us.
Best Wishes
Liz

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ingrid
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PostSubject: Re: My story   Wed 23 Jul 2008, 8:54 am

Hi Carrie

Just wishing you luck on your next future pregnancy and hope all goes smoothly with only normal pregnancy sickness and all PE free. you say your consultant said you have a 30%-40% chance of getting PE again you could look at it another way and say it could be 60%-70% that you wont which sounds better. Very Happy

Take care
Ingrid x
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Carrie06
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PostSubject: Re: My story   Wed 23 Jul 2008, 2:43 pm

Thanks for all your messages of support. I feel a bit nervous that we didn't quite wait the 6mths that we were advised to but it's happened now so have to go with the flow. Carriexx
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Penny
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PostSubject: Re: My story   Fri 01 Aug 2008, 10:09 pm

Hi Carrie, how are you feeling?
Have you had any appointments with cons yet?
Pen xx
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MrsCav
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PostSubject: Re: My story   Sat 02 Aug 2008, 6:48 pm

Hi Carrie,

I'm so sorry to hear of your loss i could Never imagine the pain of losing a child.
But congratulations on the new's your expecting again.

I know how worried you feel, my daughter was born 30+2 weeks we had a very happy ending as she is fine now. However myself and my husband took awhile to decide to try again and low and behold after only 1 month of trying i too found out i'm expecting.

I have also been told i'm high risk as it happened so early. I understand how scared you must feel as i do to, but i take a small amout of hope that 30-40% chance is not that high.

Hope every goes well for you keep us posted.

Lots of love.
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Carrie06
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PostSubject: Re: My story   Mon 04 Aug 2008, 9:53 am

Hi Penny

Unfortunately no news so far. Haven't really had any symptoms so don't feel pregnant at all. Desparately checking the post every day for the letter from the hospital so am hoping it comes this week. Think my husband is getting a bit fed up with me asking sometimes twice a day "do you think it will come tomorrow/next week/the following week?"

Only another 33 weeks and 5 days to go and feels like it's going to be a long pregnancy - at least I hope it will be. I know I should try and stay positive but it's so hard to believe that the PE is not going to get me again. But on the bright side, I have nearly finished my first bottle of aspirin, all 90 tablets Laughing so about to go and buy my second bottle.....the little things that we get excited about - hopefully those first batch of 90 tablets have done some good!

Penny, wondered if you had abnormal dopplers during your first pregnancy and if so, were they normal during your PE free pregnancy? I had absent to reverse end diastolic flow and bilateral notching of the uterine arteries so am wondering if this will happen with this pregnancy although I understand that it will be after 20 wks before they can detect this.

MrsCav, thanks so much for your message and I'm glad your daughter is ok. How far along are you in your pregnancy?

Carriexx
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Penny
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PostSubject: Re: My story   Mon 04 Aug 2008, 4:58 pm

Hi Carrie,
aw sorry you havent had your appointment yet, if it were me i would be phoning the hospital every day!! but my middle name is impatient! Laughing

In answer to your questions yes in my pregnancy with Maddie, once diagnosed about 26 weeks I then had dopplers a number of times a week ( I was a guinea pig for a new hand held doppler machine thingy) which showed notching, and also absent to reverse EDF, and also twice weekly growth scans which became dire Crying or Very sad which was the main reason for delivery in the end.
With Mackenzie I had a doppler which looked for notching ( this was back at Luton tho as Bedford didnt feel equipped enough) and i think that was about 24/25 weeks, and it showed all was fine .
Apart from intermittent trace and + protein samples I didnt have any other problems. I did have growth scans at 24, 28, 32 and 36 weeks.

So pleased you are taking the aspirin, I really feel it helped me.
If you have any other questions at all just ask.
and let us know when you get that appointment through.
Love Pen xxx
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MrsCav
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PostSubject: Re: My story   Sat 09 Aug 2008, 12:06 pm

Hi carrie,

I went for an early scan as i thought i was about 8 weeks but i'm now 7 weeks and 3days so i'm not so happy as i've now got longer to go Neutral

I'm still waiting to see the consultant about asprin but they don't seem to think they need to see me as yet so i'll have to wait and see.
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Carrie06
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PostSubject: Re: My story   Sat 09 Aug 2008, 7:09 pm

Hi Mrs Cav, I'm 7 weeks today so you're a few days ahead of me. Still no appointment for me yet and going to ring next week to check that they have received my GP's letter. Only another 33 weeks to go! Cxx
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Liz Pidgley
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PostSubject: Re: My story   Sun 10 Aug 2008, 1:31 pm

Hi Carrie,

Do keep knocking on the doors of your health providers, ideally you should be seen prior to 12 weeks gestation.

Hope the nausea settles down again soon and you have a long & uneventful pregnancy!
Best Wishes
Liz

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MrsCav
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PostSubject: Re: My story   Wed 13 Aug 2008, 3:07 pm

Hi Carrie,

How have things been going for you?

When i saw the consultant before i got pregnant he said this that and the other then the midwife i've seen didn't seem to be very interested and i still haven't heard from the consultant. You would think they would want to see people who have had problems asap as i'm sure we all want reassurance.

Only 34 PE FREE weeks to go (i'm using the positive mental attitude as there is nothing else i can do) Razz Laughing
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Liz Pidgley
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PostSubject: Re: My story   Wed 13 Aug 2008, 4:02 pm

Hi Mrs Cav,

I very much like the PMA!

I have often used 'advent' calenders, not to look forward necessarily, but to be able to see how far one has come already!

Hope all continues to stay well.
Best Wishes
Liz

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Carrie06
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PostSubject: Re: My story   Wed 13 Aug 2008, 9:09 pm

Hi Mrs Cav, things are ok with me. The nausea has kicked in...only at the weekends for some reason and when I'm at the supermarket...the meat/fish counters are a no-no.

Still nothing from my hospital but called my GP today and they confirmed the letter was sent so assume the hospital are either sitting on it or have a made a paper plane out of it Very Happy Will call tomorrow as it will be 3 weeks and think that's a reasonable length of time to wait given I'll be 8 wks on Saturday. The consultant said he wanted to see me "early" in a future pregnancy.....I'll probably be 8cm dilated by the time I get to see him at this rate!

Hope everything is well with you.
Cx
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PostSubject: Re: My story   Tue 26 Aug 2008, 10:45 am

Hi carrie,

Any news on your appointment yet? I finally decided to phone the hospital and got an appointment this friday coming, if i hadn't have phoned i would have had my first appointment after my first scan at 13 weeks pregnant.

I also got my notes through the post and they are all wrong so got to sort that out. How are you feeling is the sickness any better?

Only 11 weeks 1 day to go Very Happy
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Carrie06
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PostSubject: Re: My story   Tue 26 Aug 2008, 8:43 pm

Hi Mrs Cav, have my midwife appointment next Friday. My referral letter from GP to the hospital went astray so thankfully GP surgery was very helpful and faxed it through.

I'll be nearly 11 wks when I see the MW and won't get a scan appt until I see her. Got quite annoyed about this and rang this hospital who of course didn't have a clue what I was ranting about. They managed to quieten me down by putting me through to my consultant who has arranged growth scan for 16 wks -this is key for me as it's around this time that the IUGR set in for Alice. So that's about it for me so far - finding it hard to keep taking all my pills as having been doing it now for 4 mths and enthusiasm has worn off but I'll keep at it. Consultant seems optimistic that aspirin will help me. Hope the scan won't put my dates back as every day is an achievement. Hope you are well. Cxx (9+3).
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PostSubject: Re: My story   Fri 29 Aug 2008, 9:00 am

Hi carrie.

At least you have an appointment now and it's something to look forward to. What annoys me is that they say your high risk then you don't get an appointment for ages.

Finally my first appointment is this morning at 10+2 and i really don't feel like i have any questions answered so far the midwife didn't think it was that important for a quick appoitment, they don't seem to have a clue how important it is for peace of mind to see the consultant.

Any way i'll stop maoning and be off to see the consultant which i imagaine i will have to wait hours to see!!
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