I'm in shock - will have to inject every day for the next 7 months - and it seems my lost bean could have saved my life

[treacletart]

My DS was born at home because he came so quickly 3.5years ago. I had a retained placenta removed surgically under spinal block later that day and 3 weeks later suffered multiple pulmonary emboli. I was in hospital for a week and on warfarin for 6 months, when I was x rayed and told I no longer needed the warfarin.

I was pregnant last summer and had a missed miscarriage at 11 weeks at the start of October. As I was going in to have the ERPC the surgeon seemed surprised that with my clotting history I wasn't taking heparin. My GP and midwife had been fully aware of my history but neither had considered it necessary. Both had been encouraging about a home birth too given the likely speed of the delivery.

I saw my GP asap after the surgery and asked him about what the surgeon had said. He seemed surprised and said that as pregnancy and childbirth and surgery were all risks in themselves he didn't consider me any more at risk than anyone else but took samples to test for Antiphospholipid syndrome - which were negative. He suggested however that I see a consultant asap when I next became pregnant.

So here I am just a few months later 8.5 weeks pregnant and I saw a consultant this morning. He unhesitatingly told me I would have to inject every day for the rest of the pregnancy, that a home birth was out of the question and that I would need to be induced.

So I'm feling a little shellshocked. I have to have a viability scan on Friday and assuming all is well, will be injecting from then onewards. I'm apprehensive of the scan too because my lost bean died at 10 weeks and would have looked quite normal up til then. One of the things that made the miscarriage easier to cope with was not having seen anything flickering around earlier. But its also possible that had that last pregnancy progressed nobody would have put me on heparin and I could have been at serious risk of dying. I'm feeling now that the last baby's death saved my life! But I'm angry and confused too - why did noobody say anything last time or even after my treatment finished 3 years ago? Does anyone have a similar story or know what the standard procedure should have been?

!

Surely someone would have put two and two together but it does seem a little slack to me. Anyone with a history of blood clots should have a thrombophilia screen. Also having a tendancy to blood clots CAN make you more prone to miscarriage so surely you should have seen a consultant early in your last pregnancy?

Sorry, I have no advice but just wanted to acknowledge your thread. You must feel all over the place right now.

Im sure someone else will be along soon with something more useful to say.

I am increasingly of the opinion that medicine is a trial and error speciality

I am sorry you've had such a shock but then at least it seems you are finally under an expert's care .. good luck for your pregnancy and birth

Hi treacletart.

I have a blood condition called Leiden V which causes my blood to clot more easily and i had 2 dvt's prior to my first pregnancy and then a clot when 11 weeks pg with my first. As they knew before i was pg with my first they were going to put me on clexane (heparin injections) from 28 weeks one but becasue of the clot aT 11 weeks i was on it for the rest of my pregnancy. For my 2nd pg i was on it form the beginning again. Although there was no mention of induction for me with either preganancy although the consultant said that i should have a "small baby early" in my first pregnancy and my ds was five weeks early {smile}

I had no probs with the injections really except some big bruises ! I do think a home birth could be out of the question due to the risk of haemmorrage (sp??)

Do ask if you have any questions re the injections or anything.

im shocked that after having a blood clot you didnt have further investigations as you obviously were prone.
i suffered a pulmonary embolism after having dd2 and further investigation revealed id previously had a blood clot in my leg which i never knew about, that freaked me out, however, now i know my history, i will always be given clexane if i need an operation etc.
the way to look at it is, dont think about what might have happened, your in very good hasnds and the treatment you are getting will prevent such a reoccurance.
good luck with the rest of your pregnancy

treacletart.. I don't know what to say! I'm sorry that you didn't have the correct information from the start but am really glad that you do now.

my twin sister, taylormama has had two blood clots, my mum has had one, i have had a suspected clot when pregannt

i am stunned such a lacksadaisical attitude was taken with your care

my sister had to inject with clexayn ( sp) and i was on low dose aspirin for the last 3 months of my preganancy and 6 weeks post natal....i was treated as high risk due to the family history alone...

we were all tested for factor V leiden..all negative..we just seem to have blood that is prone to clots!

i am so sorry that this has happened, that despite such a massive increased risk to your health, your GP did not question the safety of you and your babies

i wish you all the very best of luck for a happy and healthy pregnancy

Just wanted to check in as a fellow clotter - Factor V Leiden like Morgan but I've never had an actual clot.

It must be horrible for you to have been messed around so much treacle, (and I'm not especially impressed with your GP), but the whole field has moved on a long way in the last few years and it doesn't take much for non-specialist doctors to let their up-to-dateness slip.

Now you have a consultant with his head screwed on, you could ask for a full thrombophilia screen (they may have to send the bloods away, probably to the Royal Free if you're in London) if you want to know why is is you have a tendency to clot. Some of the support organisations for specific disorders are very good, but are only useful if you know what you've got.

(I'm 7-ish weeks and I'll find out in the next few weeks what injections I'm due this pg - I'll keep a look out for your threads as we may end up spiking ourselves together!)

Thanks girls

So I hesitate to ask this - but do you think my history clould have caused the miscarriage? My GP and the consultant told me they were unrelated.

I'm just determined to make sure this doesn't happen to anyone else. I'm thinking that maybe given the risks I should have been given something after the placenta removal to prevent the clots happening at all. I'm definitely thinking I should have had a proper hospital follow up after my warfarin treatment finished. And it looks like I should have had loads of other blood tests too - I know Ive had antiphospholipid (?) tests but I'm not sure if thats the same as any of the other conditions you've mentioned.

I'm not certain why I'm going to be induced but I think it's more to manage what might otherwise be an unfeasably quick birth than anyhing dire ctly related to clotting.

Blimey! Well you're all right of course I should try to think positively about the future rather than freak out about what might have happened.

Roll on Big Brother, Desperate Housewives and some cheesecake.

mmm, cheesecake!

I might have a word with your consultant when you next see him and ask if he could get you an appt with a haematology consultant (they're all mates in the canteen, you know ), just to put your mind at rest - they'll know more about clotting but less about pregnancy, iyswim, and will be able to order the appropriate tests if you want them.
I got a booklet of Useful Info About Thrombophilia too, which was quite informative.

Thanks MrsB I'm in again after my scan on Friday and I've ben put with the high risk "Bond" midwife team so I will insist on all the relevant tests asp. Really not looking forward to the jabs - I'm assuming you get more used to them but dont they get more painful as you get more bruised and the bump grows too?

treacletart, thrombophilia (tendency to form blood clots) can be associated with miscarriages but your m/c was not necessarily caused by that. (Clotting disorders are often found in women who have had recurrent m/cs for instance, and these women are treated with anticoagulants during and after pg).

Sounds like you have a clued up consultant. Good luck with this pg.

Hi Treacle
I've had similar but a different experience. I had two m/c in a row then demanded gp for tests, even though she said you haven't had three in a row, one borderline test result came up for clotting. So went to specialist had more tests as a result, got pg again without taking anything. But developed pre-eclampsisa with ds, had to be induced and take hypertension meds for weeks after. I then got pg again but had another missed m/c at 12 weeks baby died at 7.5. Found another dr got tested again even more as things can change after pg's. I was already having high blood pressure in the early pg, and they later found had mild thrombophilia.

So yeah i reakon some of my babies could have been saved.

Anyway I'm now 8 weeks and take asprin and extra calcium everyday and blood pressure is low, but my obstetrian thinks i will get pre eclampsia again, so i may be induced again.

Sadly I really think you have to take your own responsibility for your medical health, Find good dr's, etc, etc unless you are dying i don't think many dr's take things to seriously.

Your specialist sounds good and as much as i used to be for home births i think any risk of complications calls for a hospital. I was well looked after in hospital, but was at the start booked for birth centre.
Good luck for your scan on Friday.

Hi treacle (and everyone else!),
I just wanted to say that I got a pulmonary embolism when I was 11 weeks pregnant (I am 19 weeks now). It took me forever to get the correct diagnosis. I was in A&E in agony, unable to breathe properly and coughing up blood clots and they told me I had slept on my arm funny (?!) and to take some antibiotics even though "you don't have a chest infection and they won't do anything but they might put your mind at rest"! After a few days of returning to my GP and another hospital, I was eventually properly diagnosed and was immediately admitted and told I would have to inject Heparin twice a day for the duration of the pregnancy and for two months afterwards. I also have this factor V leiden but it has never caused any problems before even though I fly back and forth from Australia once or twice a year.
Anyway, I just wanted to sympathise with the pain of p.e. and the injections. They are nasty and certainly not fun but the alternative just doesn't bear thinking about. It is horrific that we have had to endure this but just imagine if those clots had ended up anywhere other than your lungs. Scary thought. I find putting ice on the injection site immediately after injecting helps with the bruising and pain.
It does help to know that other people have been through this (all the doctors I saw made me feel like they had never seen a pregnant woman with a blood clot before and they just didn't know what to do with me!).
Sending lots of love to all you injectors!
Aqua xx

Hi Treacletart,
I have a DVT with this pregnancy and have to inject twice a day with Clexane. I'm now 21 weeks and have been injecting since 9 weeks and will have to carry on injecting for 6 weejs after the birth as you probably will too.

You do kind of get used to the injecting. I go through good periods and bad periods when every bloody injection hurts, and I have bruises all over my stomach and am worried that pretty soon I will run out of a non-bruised stomach area to inject into

I did try the ice for a while but it didn't help me unfortunately. Someone else told me it could be because of the low dose aspirin I'm on which makes bruising more likely. I'm seen regularly at the hospital which is a great relief and I'll be having extra scans to make sure the baby is growing ok.

Good luck, its not forever.

Sue
x

Jabbed myself with Clexane for the first time today - 1 down 226 to go. Apparantly I can't have thrombophilia screening whilst pregnant, but I wont let this lie. I'm determined to get my local NHS trust to put some proper administration in practice so this won't happen again and all women with PE's and all local GP's and midwives can be properly informed.

dear Treacle

I don't have any knowledge of your particular condition, but I did have a missed mc earlier this year (now 33 weeks with a new baby - although won't forget that little one ever). From what I understand, that kind of missed mc at 8-10 weeks (although they find it hard to find out specifically at such an early age in particular cases) is a kind of mis-communication between the chemical biology required to progress the pregnancy, ie a kind of short-circuit between egg and sperm. I really recommend looking at books by Prof. Lesley Regan - she's a specialist in miscarriage, and has written (IMO) a really great general book for Dorling Kindersley on general pregnancy and birth. I've found it invaluable for all kinds of questions and issues - scary and routine alike.

Also - you might know it already - there is a pg after mc thread, lots of amazing support there. The mc has cast a long shadow over this pregnancy for me, and I would have got really low without the amazing MN'ers on that thread. Don't underestimate the weirdness that particularly a missed mc causes - particularly in the early stages - the very fact that something goes wrong without you even having an inkling (such as bleeding) really messed with my head - esp. as I had horrendous morning sickness up to the ERPC.

Regarding cock-ups - recently I had a similar scare about my thyroid condition and possible effect on my baby. I think your attitude, to be thorough for the sake of other people and to improve things for others is a great one. I'm about to write a similar letter to the consultant and the GP surgery involved.

But what I really wanted to say was good luck and take care - the missed mc can be very disorientating, no-one knows what really causes it, and although these things are all linked, there is a lot you might be able to do just to put your mind at rest or go through that grief. Lots of people had good experiences through gardening, giving to charity, etc, esp. around that baby's due date.

good luck with this pregnancy, and let us know how it goes

Hi Treacle!

Dont have much to add except that the injections do get easier and less painful as time goes on! Ive been injecting clexine since week 4 of this pregnancy Im now close to 34 weeks. The bruises get smaller and as my bump grew i moved to the tops of my legs/thighs/bum!

I was diagnosed with Factor V Leiden after suffering 5mc's and one serious case of Pre eclampsia resulting in DS born at 31 weeks and inuterine growth retardation (hes 4 now btw and doing great!)

All doctors have told me that its not meccesarily the injections that has help this preg continue (i couldnt get past 6 weeks before) and it may just be one of those things, but hey if its in my mind that its helping then Ill carry on!

As for being induced, I know all of the doctors Ive seen have said its far to dangerous for me to go past 40 weeks. So I wouls imagine that would be why, something to do with the placenta starting to fail after then and we are more at risk!

Anyway, My back feels like its snapping in half and I need to pee again!

Any questions ask away, Ill do my best to answer!

take care x x

I can't believe I've found this thread!!
I've have 2 x DS and had easy pg with both, PPH big time after first, on IV for 2 nd which reduced PPH. I had 2 m/cs last year and blood tests have highlighted a factor 2 mutation (which I would have had all along, but may be causing m/cs). The consulant advised Clexane inj as soon as I know I'm pg. we have just started to TTC again and am doing early tests as he said it was best to start the injs early, as soon as I know I'm pg.
I'm having a few probs getting my head around the fact that I'll have to inject, but luckily don't mind needles.
Has anyone got any more info / advice for me?
Soory to ramble on, but it's nice to feel that I'm not alone!!

Thanks so much for all the replies girls. It really does help to hear from people in the same boat! Mrs Badger has recommended "pressing for a couple of seconds with or without cotton wool / gauze etc stops the smarting a bit and can help reduce bruising" on the Aug ante-natal thread. Any more of you seasoned jabbers got any good tips for Jossie and I and any other new self-injectees?

I have antiphospholipid antibody syndrome (diagnosed after 3 mcs- causes blood clotting) - i also had to inject with clexane and take aspirin. The bruising was variable and a GP friend of mine said not to rub the injection site as this would make it worse. I still don't know why it sometimes hurt and at other time didn't!...I now have 3 DC so there is definitely hope after mc.

I've also got an overactive thyroid and apparently the since the conditions are both auto-immune, it is quite common to have both although they themselves are not related IYSWIM. in fact a frind of mine also has antiphosphlipid and an under-active thyroid.

The treatment I had on the NHS was brilliant and I encountered some really knowledgeable consultants. I was induced with DS2 and DD at 39 weeks as they didn't want the placenta to fail and also growth scans indicated a large baby ( ironic since the conditions were supposed to carry the risk of small baby! - in the event, she was 9lb at 39 weeks)

HTH

TT and Josie!

Ido have one tip, seems to work for me, I tend to do my injection of a night time after my bath, I think its easier to get in then because the skin is softer from the soaking in the bath.

Do you ue alcohol wipes also? I use it before and after to help cool down the stinging. You've probably already been told to pinch an inch before putting it in, and make sure you withdraw the injection back a bit once its in to check if theres blood in there, (Whether you hit a vein or not) Ive have only done this once though so its not that easy to hit a vein.

My bruising is deffinately alot better now, the longer Ive been doing them the easier its gotten tbh, most days I just geta little red/purple dot now where I have stuck it in.

You can do the injections in your thighs, hips if you can pinch it there like me lol, arms are bum! The arm stings like nothing Ive ever felt before though so be careful there, I think they heard me screaming 200 miles away LOL

Oh one last thing, push th eliquid in slowly, if you put it in too fast it lumps up underneath the skin and hurts alot more!

Good luck girls, Im off for a trace, Im having a big baby!!

Thankyou for the advice so far-I'm not having the injs yet, just waiting to get my BFP!! as have to start imediately after that. I ust like to be prepared about what is to come.

.

Hi Girls,
I could have done with a thread like this earlier in the year. I was given lots of tests after 2 mc at the beginning of the year and had positive anticardiolipin and anti nuclear antibodies so was told I had antiphospholipid syndrome and to take aspirin and clexane injection from the next time I was pregnant.
So when I found out I was next pregnant I started injections. They weren't as bad as I thought but not particulary nice. I was unfortunate enough to hit a vein. You don't actually realise at the time - it was a few hours later when I decided to look at my tummy to find a lump the size and colour of a plum!! Quite scary and went to a&e - she said it can be quite common as you are injecting an anticoagulant so if you do hit a vein then you cause it to bleed even more!! Sorry - not trying to scare you new users - actually trying to say, don't worry if it does happen!
Anyway, unfortunately I mc'd again and after getting in touch with a heamatologist who repeated my blood tests have found out that I definately don't have antiphospholipid syndrome (apparently you can have raised levels if you have any kind of inflamation - I'd just been snow boarding and torn my hamstring before the original tests!!)- which really angered me about my original consultant who didn't repeat the tests as not only does it make you concerned about pregnancy but there are also other blood clotting concerns.
I have since found out that I have a bicornuate uterus so have now got something else to worry about next time round.
Anyway, good luck to you all and I really don't envey any of you having to inject - it's interesting to hear from some of you who are quite far on as I was wandering where else to inject even only after 30 or so days worth!!
I'm planning on ttc as from next month again - I've decided 2007 is going to be our lucky year.
xxx