Please help I'm scared..........long

[tristaleejac]

Hi everyone, sorry to moan but I'm getting worried about stuff. Some of you might know me from antenatal thread I'm due in April. I know it's a bit early for worrying but I feel I just need to voice my worries or I'm going to get more and more anxious.
Ok in my last pregnancy (DS now 3) I was induced at 39+3 due to pre-eclampsia. The labour and birth went amazingly well and BP returned to normal as soon as DS was born. 3 days later and as I'm waiting to leave the hospital with new baby a student MW checks my BP and finds it has risen again. She asks older MW in front of me and old MW says "don't be silly I've seen women with BP loads higher than that". Anyway student was still worried and said to me that if any signs of PE return I am to come back into hosp straight away.
I got home and was fine until woken in the middle of the night by a terrible nightmare that I was dying. i got out of bed and felt drunk and woozy. Naive me thought I was exhausted because of new baby and just went back to sleep.
Next morning all PE symptoms returned and just as I said to DP we should go back to hosp and check, I collapsed and started having convulsions. I was rushed into hosp in ambulance and re-admitted. I kept having convulsions all day which kept being stopped my magnesium drip. Heard MW in hall casually talking about me calling me the sickest woman in the hospital (it was a maternity hosp in Ireland BTW)
Anyway by 2am after being there all day and after the doctors continually having to rescue me from the on-going fits, they wheeled me through to theatre and said they had to just make me sleep for 2 mins to stop the fits.
I woke up next morning in intensive care in a different hospital, hooked up to all kinds of machines and with a breathing tube down my throat. DP later told me I was rushed from maternity hosp to general hosp in an ambulance with doctor, nurses and all kinds of machinery.
I was in there for 2 days, wasn't allowed to see my baby due to risk of a newborn coming into hospital. They sent me polaroids from SCBU where they were looking after him for me.
I was transferred to a gynaecology ward where the elderly woman across from me died in the middle of the night. I had to listen to them perform CPR on her.
I was eventually sent home to my baby and DP where I recovered and gradually put this all to the back of my mind.
(BTW it turned out that the dream I had of dying was also convulsions, it was my first fit, and I thank whoever is up there that I woke up from that)
It's only now I'm pregnant again that I'm becoming more and more terrified. I was so close to dying last time I just don't think I can mentally cope if I even get symptoms of PE.
Look I'm sorry to go on for so long, but I had to get this out. I just want proper care this time I don't ever want to go through that again.

god how awful for you. No wonder you're scared. There will be someone you can talk to about this, professionally. I don't know who but I didn't want to ignore your post. I hope you manage to find some help with this and get some resolution. I'm sure more knowledgable posters will be around x-posting as I type. good luck. x

Firstly congratulations on your pregnancy.
So sorry that you had such an awful time with your last pregnancy and delivery. You must be scared and rightly so. I would have thought that they will probably keep a rather closer eye on you as you have such a major incident in your medical history. I would probably choose to go to a different hospital if you can too.
Hope all goes well.

i am so sorry to hear you went through that, and i'm here moaning about a lousy MW and rib pain!

Tell your MW everything and tell her your concerns, they cannot possibly ignore it. ask for more regular check-ups and if you think your BP is high, and they say otherwise, tell them straight.
im not the best at advice, but i can listen

Can you talk to someone professional about this just to try and put it behind you a bit or at least try to make sense of it all??? You poor thing! Pregnancy makes you anxious and neurotic at the best of times so with a history like that I think I would be having nightmares as well! Am not able to give any real advice just that at least the hospital will be aware af it happening in the past and will be watching out for possible future problems!!! Really do hope it all goes well for you!

39+3 is a long way to go. There is no need to go that far if you have any symptoms etc. I've been induced at 37+0 weeks twice due to another complication, it's no problem and many people have been induced much sooner.

If your symptoms come back, surely they can induce you by 37 weeks and I don't see why they can't keep you in hospital and use drugs to control your BP if it is abnormal after the birth?

I remember being admitted with PE at 35 wks and a girl saying to me 'I had that in my first pregnancy, and if I were you, I'd be crying now'
I wasn't sure what she meant until I'd been there a couple of days feeling more and more unwell.
You poor poor thing, your post is incredibly upsetting so I can see why your petrified.
However, my second pregnancy was so much better and so different. I'm sure yours will go more smoothly. If you do get PE again then they will monitor you more closely, and they will keep you in for longer. Your experience is very extreme and unfortunate, but you have done it once and you can do it again.
Good luck.

Thanks for replying so quickly, one problem is that I had all this happen to me in Ireland and now I'm back living in Scotland. Because it's a totally different country the docs over here know nothing about it so it's all just word of mouth from me to them! I'm not sure if the docs can send for my notes, I'm sure there's a way but to be honest I have a tiny feeling there will be no notes in existence anymore to cover their arse. So far doc was ok when I went a few weeks ago about this pregnancy. He said they'd look after me. But I'm moving to a new area and will have to register at another surgery. I suppose I'm being silly but I'm terrified they'll not believe me or wont take me seriously.

they should send for notes, they have to have a full medical history on all patients, and if you have told them that you have had PE in the past, they would need to get notes from prev doctors/MW's etc about that.

your not being silly at all, they have to check everything you tell them. im sure you'll be fine

Speak to your doctor and tell him/her how worried you are and ask if it would be possible for you to have regular BP checks - if they're not going to do it ask your CMW if she will do it, most do a weekly clinic. I'd also ask about taking Junior Aspirin through this pregnancy.

One thing I've learnt from having problem pregnancies myself and being high risk is that you must be proactive and your own advocate. Decide for yourself what you want and tell them, remember they're working for you, your GP is paying them on your behalf to do the job. Make sure you know where your local PALS is (mine know me know lol) and use them to back you up if you aren't getting anywhere.

They should be able to get hold of your notes. When you register with a new surgery you will have to have a medical anyway. YOu can ask them then.
I'm sure someone on here will have the knowledge.

Firstly I want to send you all my most heartfelt sympathies- you really have been through the mill to put it mildly

I would demand consultant-led antenatal care from as early as possible, as there are things they can do to reduce the chance of PE rearing it's ugly head again. Low dose aspirin (75mg per day) is very often used in women with a history of PE but is ideally started at or before 12 weeks - it should only be prescribed by an obstetric consultant, not a midwife, so you need to be seen by one asap. Can you go to your GP and explain your concerns and ask for urgent referral to an obstetrician who has experience with PE?

Also they should increase your monitoring in your third and possibly second trimester, so that you have regular BP checks and also give you some dipsticks to test your urine for protein at home. They should also consider more scans to check on baby's growth and blood flow through the placenta (doppler scans). If your BP does creep up they can give you drugs to slow or halt the rise and keep everything more manageable.

Did they do any follow-up tests after your hospitalisation? If not hopefully a consultant will test you for blood clotting disorders (thrombophilia etc) and autoimmune disorders which have been shown to increase likelihood of PE. If you come back as positive for any of these they can give you heparin (sometimes known by its brand name of clexane) which thins the blood even more than aspirin and can also help reduce risk of PE in ladies with clotting or autoimmune issues.

Definitely demand the care you need- it helps ease anxiety so much when you have a plan of care that seems good- that will monitor you and also to discuss the "what ifs" so you know what might happen.

There is a slightly higher risk of developing PE than that for the "normal" population because you've had it before but depending on your circumstances this can be quite low still- and if PE does re-occur usually it is milder and later onset.
I had severe PE & HELLP syndrome with my firstborn (at 30wks) and unfortunately did get it again with my second- but not meaning to scare you it was a lot less severe, I was so well looked after throughout my pregnancy- and the PE didn't become full-blown so recovery was swift. But I had great consultant-led care second time round.

Also if you are still traumatised by everything that happened (which would be only natural) you may have a form of post-traumatic stress disorder, and you may find counselling could help...Remember it's not just your body that needs looking after during this pregnancy it's your mind too!
And don't be afraid with any doctors to seek second opinions or ask to be referred to different hospitals if you have any doubts over the quality of care they are offering you. You need to be taken seriously.

I really recommend this PE support forum- great ladies on there- helped me enormously through my second pregnancy:
pesupport.friendhood.net/index.htm

Really hope you get the medical and emotional support you need to relax and enjoy this pregnancy- thinking of you and wishing you bucket loads of good luck xx

Oh sweetie, you really have been through it but they will know what's gone on before and they will be watching you so carefully that they will act alot quicker. There's nothing to say that this is going to happen to you again. They will have your notes and you will tell them, they will monitor you like a hawk. They really will look after you. You are allowed to worry, after all you went through they will understand. They will also take you seriously, honestly they will.

Hi, I had pre eclampsia and HELLP syndrome with ds1 at 35 weeks, I was really sick but recovered. With dd i was worried and anxious from the outset but everyone watched me like a hawk and i was much more aware. I had PE again but caught earlier so wasnt as sick. Being pregnant again did make me relive it all and things I thought i had got sorted came flooding back. Also it made me realise how tough those first few weeks were. At the time i thought it was normal but having done it again it was so much easier 2nd time because i wasnt so poorly. A good website is www.apec.org.uk it really helped. Do find a midwife and consultant you are happy with and talk to them about your worries. Later on flag up anything you are concerned about. Fra better to be thought of as overanxious than not to mention something that is important. They gave me an elective section at 37 weeks because of my history they didnt want to leave me go any longer. Good job as that day all my bloodwork changed. Good luck you will worry but thats normal considering what you have been through.

madmarriedNika, I normally say "get tested for Hughes!" all the time and decided not to on this as she got so far, but that's rather naughty of me to assume because someone has to be the 18% that do have a baby at the end, right?

You've included a lot of things I forgot or didn't think about or wasn't sure on - PreE is not really an area I've looked much into. I guess really it is treated very much like Hughes in follow up.

madmarriedNika - I was never tested after all this happened. It was never mentioned again.
The only thing I ever had that was different since then was palpitations, I get a fluttery feeling in my chest. I used to get it all the time after all this but now it's very rare. I've never told anyone that til now. Don't know if it's related, I always just thought it was a nervous thing after being through the trauma of it all.

Thanks to you and everyone for such quick replies. I've been wanting to talk about it for so long and to be honest tonight I've been able to cry about it at last. Thank you all so much.

I get palpatations quite often, especially in my last pregnancy. I was going to mention them to my Rheumy but now I won't see her till March as she is leaving me with her obstetric team.

I would be asking for testing (even in pregnancy if they say otherwise) personally.

Sending you huge hugs Tristal, I still cry quite frequently about PE- I think it's good really to cry.... but it's so hard too.
If you can I would mention the palpitations to your doctor, I don't know any more about whether that's related to PE but I'm no medic and I really believe the docs need all the info they can have to keep a close eye on you.

Be gentle on yourself and share how you feel with others close to you, or if that's hard keep talking to us. xx

PS. Tinkerbellesmum- I don't know much about Hughes except that some women who experience PE also turn out to have Hughes- but sadly they still know so little about PE. In my case they can't find anything "abnormal" about me that would predispose me to PE but I've had it twice. But at least I know the symptoms now inside out, and low dose aspirin certainly helped me too.

There is what they call a "1 in 5 rule". A lot of autoimmune diseases, pregnancies that go wrong etc have a 1 in 5 chance of being Hughes, which is why I go on about it all the time. If you are autoimmune or have had problem pregnancies, pregnancy losses then it's worth getting tested.

One of the biggest problems with the disease is the test results mean nothing because they vary so much - during the day, the month, diet, general health...

Congratulations on your pregnancy!

what a horrible experience you had last time, no wonder you are getting scared.

There is no reason your new docs should ignore you, your description of what happened is a little too vivid to be made up neurosis and you should demand to see a consultant if they don't suggest it.

For the current fear you have and the experience you had, you could try something called Emotional Freedom Technique (EFT) which is a therapy designed to alleviate severe stress/fear (can be used for PTSD for e.g.) I think it could be very beneficial for you now, as your fears will make you very unsettled. Have a look at this website to see if you think it would suit you.

Good luck with your docs - stand firm and demand the care you know you need!

Hi Tristal,

Have seen you in the April antenatal thread, how awful for you what you and your family went through and I can see why you would be concerned about this happening again. Don't have any experience with PE but just wanted to say that if you feel you are not being taken seriously enough with them not having previous notes then take DH with you on your appointments. I am sure he would have had a terrible time watching you on what should have been a hppy time for both of you and will be able to let them know that you are not exaggerting. I really hope that this time it will not happen again but please don't let them fob you off, you really must be kept a closer eye on during this pregnancy for your own health and sanity.
Take care and see you in the antenatal thread!!!

Hi everyone and thanks again for your support last night. I went to see the doc this morning and she was very reassuring. She says I'll get sick of the amount of people who will be testing my BP, urine etc all the time. She promised that the slightest change and I'd be in hospital straight away. I will also be kept in longer after the birth as that's when it got bad last time.
I'm happy with that. I just needed to know they'd watch me.
BP was fine today too.
Thanks again for your help and advice. You gave me the confidence to go in and just air my fears. I feel a lot more supported now.
xxx