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?

I'm 27 weeks now, and have been on Clexane since 5 weeks (previous DVT, but thrombophilia screen showed now underlying condition). I've been surprised how good to injections have been and don't even find I bruise any more. What I do is do them after my shower in the morning, when skin is soft, pinch a roll of skin hard, put needle in, then release the roll and slowly depress the plunger. Sometimes it bleeds, but most often it doesn't. I am taking Calcium tablets daily as my consultant advised that due to possible (but I gather fairly small) osteoporosis risk. I've also been prescribed below the knee compression stockings which are very, very comfortable, I have to say.

I did find that there are differences of opinion amongst doctors about how cautious they should be. My consultant I know is of the 'super-cautious' school, but others I saw disputed that I needed Clexane, or that I needed it from such an early point. I'm quite an anxious person though, and I find it reassuring to know that I'm on the medication, which doesn't seem to be causing me any problems. Getting to this stage though, I'm getting a bit worried about the birth, and need to find out more about how being on Clexane will influence choices etc. Like you, I had a very quick first delivery, and now I'm a bit worried about bleeding etc as I may not get much warning to stop taking the Clexane (you stop as soon as you're in labour, and start again 6 hours post-natal). I know that you can't have an epidural until you've been off Clexane for 12 hours, and I guess a C-section is best avoided at all costs unless it's elective. I'm planning to ask more at my next ante-natal appt at 30 weeks.

Good luck! Sorry to hear about your miscarriage, and hoping that the injections settle down.

Bramshott,
How can you still pinch a roll of fat at 27 weeks? I am 21 weeks and my stomach is now hard hence me finding it hard now to find somewhere to inject.

Sue

Have had 2 dvts (one whilst 5.5 months pg with ds1). Was genetically tested as is standard procedure for under-50s in this area - have 2 susceptible things (one factor V; can't remember name of other). Just had ds2.
After 2nd dvt was told would need to take warfarin forever (St Mary's, Roehampton). I was then switched to clexane as I wanted to fall pg again (St Thomas's). Took for 8 months before falling pg. (Moved to Kingston) At 28 weeks the dose doubled and was told will need to take clexane for 6 weeks post-birth, then nothing (Hurrah!). So I guess the advice depends on who is treating you. I've also found that the GP and MWs don't really know much about it either and that I was repeating back to them what the consultants were advising me to do so they knew how to treat me.
Anyway, ds1 arrived at 41 weeks; ds2 at 39. Both labours completely uneventful. With ds1 got stranded in hospital for 4 days "just in case" I haemmhoraged. With ds2 I refused to stay, though they did try.
No mention of being induced with either. Was told couldn't have an epidural and that if possible they'd avoid giving a GA because of the increased risks.

If have nr3 will again have to take clexane from moment decide again, according to Kingston anyway.

I've had a previous PPH (when not inj Clexane), when I asked my consultant about an increased risk of haemhorrage with Clexane he said the dose is so small that the extra risk is negligable.
Hopefully he is right

treacletart - thought you might be interested in these guidelines

This information should be known by health professionals caring for pregnant women.

Peacemakeruk - I do them at the sides, sort of above my hip if that makes sense. I find I can still get a roll of fat there . I will switch to my thighs if it gets too difficult.

Jossie - that's reassuring, thank you for mentioning that.

I'm amazed how many people have DVT / PE in pregnancy, and how little many midwives and obstetricians know about it. I'm involved with a charity called Lifeblood who are campaigning to raise awareness, and they have a very good factsheet called "Thrombosis in Pregnancy" which they will send you, or you can view/download from their website here I have a stash which I take along with me to ante-natal appointments and wave at anyone who says stupid and uninformed things!!

I had clexane (heparin) injections throughout my pregnancy, started more or less immediatley. I went though IVF and they thought my body was attacking the embryos and destroying them, hence the heparin injections.

I used to put a bag of frozen peas on the injection site before I injected, seemed to help a little.

I agree Bramshott. When I was seen in A&E at 9 weeks pregnant with the pain in my calf I was told that it was highly unlikely I had a DVT but he sent me off for a blood test which was positive. I have since found out that the blood test is pointless when your pregnant because it will more or less always come back positive. Despite them not thinking it was a DVT I was very lucky in that they sent me for a scan regardless where the clot was picked up. I dread to think what could have happened to me if they hadn't bothered sending me for that scan

Peacemaker - I was in massive pain a week post-natal, could hardly walk, left leg swollen to massive proportions and they still didn't want to scan me! My main gripe is that there is so little information available to both pregnant women and to midwives about this, so everyone assumes it's incredibly rare but and as far as I can tell, it's not actually that uncommon. And then Pulmonary Embolism kills more mothers each year than any other pregnancy complication (and this has always been the case). Sorry, this is my pet rant - I went on GMTV last National Thrombosis Week, and was hopefully less ranty there!!

Bramshott,
I am incredibly lucky because to look at my leg there was nothing wrong, no swelling, no discolouration, nothing, just the pain and even that wasn't THAT bad. It felt like I'd woken up the morning after getting bad cramp at night, just felt really stiff. My DH was telling me not to bother with getting it looked at but boy am I glad I did. He's one of these, leave it alone and it will get better soon kind of men, lucky for me I ignore him

Peacemaker - lucky that you did! Like you, I had no swelling initially, but then after nearly a week of pain, and doctors telling me I definitely didn't have a DVT, I did get the classic swollen leg which is what finally made them take it seriously This was 4 years ago, so I can be flippant about it now, but at the time it was kind of scary!

Treacle - just wanted to pop back and say I didn't realise this was you when I originally posted (I'm on the April ante-natal thread) - sorry. Glad it's all going okay - hope the scan was okay on Friday too, and that you're getting to grips with the injections.

Hi
I'm 31 weeks now and been injecting since about 20 weeks - I have Factor V Leiden and low anti-thrombin levels - apparently I have a mutation which has never been recorded before so am a medical mystery! They put me on Clexane twice a day initially and it was fine - apart from the bruising - for about 5 weeks - and then I had an allergic reaction to it and turned all pink, blotchy and itchy, not just where I'd been injecting but all over my bump and boobs! So I had to come off it and they changed me to a different form of the same drug - called Fragmin - which so far seems to be OK.

My advice for injectors would be to inject in your thigh - I couldn't bear to inject in my tummy and it seemed to hurt so much more there - in the thigh it does sometimes hurt but not as bad. Always make sure you get any air bubbles out of the injection first as I always found it much more painful if there was air in the syringe. And I try not to rub or press where I've injected as I found that this caused more bruising! But I guess everyone is different and you've got to find what's best for you...

I've found the Haematologist Consultant extremely helpful and reassuring throughout all of this and the Obstetric Consultants quite clueless and overly cautious - I'd advise anyone to get referred to a haematologist if you can as they seem to know much more what they're talking about in my experience.

Good luck everyone!

Funkymumtobe,
I injected into the front of my thigh - once- and never again, it hurt so much I cried and it took ages to stop. I was told to pinch fat and inject into that but I don't have fat enough to pinch on my thighs. I have the air bubble at the plunger end of the syringe but doesn't seem to make any difference to how the injection goes but I was told to inject the air at the end which is supposed to stop bruising but I've found thats rubbish.

I wish I didn't have any fat on my thigh, am very well padded so should be ok!!

First time I've caught up with this thread this week - thanks for all the extra info! Mears I was particulalry interested in the RCO guidelines. I hadn't been able to find them myself on their website. I contacted them last week and although they couldn't help me with specific guidelines regarding PE's they're getting some Prof to review it and get back to me. In fairness, they did seem pretty concerned. I'll be sending all the literature links to my GP and community midwives. Seems to me multiple postpartum PE's would definitely put me in the high risk category, I should have had full thrombophilia screening as soon as I came off the warfarin and I should have had Clexane ready to take as soon as I had a positive test result. I'm determined that other women in my area aren't left uninformed. Bramshott it was so sweet of you to pop back and I'm in admiration of your campaigning! I'm happy to report that the Clexane injections are going absolutely fine now that I've ignored the hospital nurse's advice to go in "shallow in at an angle" and read the leaflet myself (should have done it immediately ) that says to go in at 90 degrees deeply. I'm hardly marking at all compared to my heparin jabs and it doesnt really even hurt that much - could be because pinching at least an inch is absolutely no problem at all for me!