A cautionary tale

[Vickster]

I have been agonising over whether to start this thread, as my intention is not to alarm, but have decided that others may benefit from the experiences I have had over the last week.

I called NHS Direct on Saturday following a week's worth of what I thought was a chest infection, as for the previous two nights I had been unable to sleep as when I laid down I found it almost impossible to catch my breath. I was hoping they would refer me to SELDOC and I could get some antibiotics and clear it up.

The SELDOC doctor at Dulwich Hospital, as well as checking my blood pressure and listening to my chest (which I expected due to the symptoms I was complaining of and because I am 23 weeks pregnant) luckily also checked my pulse and oxygen saturation. She found that the former was too high and the latter was too low and sent me straight to A & E as she suspected a pulmonary embolism. A & E carried out further tests which seemed to confirm the diagnosis and I was admitted to Kings on Saturday evening where I remained until Wednesday evening, receiving anti-coagulant injections to thin my blood until the diagnosis was confirmed.

We had a couple of agonising days deciding on which diagnostic test to let them carry out, as all carry a risk to the unborn baby and some to me at this stage in pregnancy due to the high levels of radiation. We eventually decided on a VQ scan which confirmed the diagnosis, which while obviously awful news, validated the need for the scan and treatment I had been receiving. I have now been discharged with twice daily anti-coagulant injections and am extremely grateful that this was picked up when it was.

The reason I have decided to post this is that I was not aware that there is an increased risk of pulmonary embolism in pregnancy, and the doctor's view was this seemed to be the only reason I had it (there are obviously other risk factors). I understand the figure in pregnant women is about 1:1000. None of the pregnancy books I have read highlighted this particular risk (maybe I was just unlucky in the ones I chose), so I thought it worth bringing to the attention of others. The problem with the condition is that many of the symptoms are things that one would ordinarily associate with pregnancy, such as shortness of breath and chest pain, but are clearly worth bringing to the attention of your GP or midwife. The attached is a link to the BUPA fact sheet on the condition which is worth reading.

BUPA Factsheet

Again, my attention is not to alarm, as the likelihood of ths condition occuring is still rare, but I thought knowledge of the condition and symptoms to look out for would be of benefit to others, as it certainly came as a shock to me.

[GSJ57]

Wow! Scary stuff - glad you are doing better.

[pripolla]

I also suffered a pulmonary embolism during pregnancy, it was awful. Not to alarm anyone, as Vickster said, but it was something I was unaware of, and pregnancy sure is a risk factor.

[sb]

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[EDmummy]

Scary but great post. Glad to hear you are doing much better. Also a good news story on the response you received from the NHS.

[Pickle]

Vickster, thanks for an excellent post. I've had two babies and wasn't aware of the increased risk, so hopefully someone reading this may be helped by your experience.

I'm glad you're OK x

[Fuschia]

i had a bad clot in my iliac vein in pg no 1

and turns out i have a blood clotting disorder and need heparin injections if i fly and when pg. i also knew nothing of the risk.

glad they caught it x

[JessB]

Kings have a very good team for blood clotting. I saw them during first pregnancy, because my mum had a PE after giving birth to my older sister (the risk is also raised post natally, so keep a watch then too) and they consider that the risk can run in families, particularly through the female line. Dr Arya at Kings heads up the blood clotting team in haematology there and he took it very seriously and even got my mum down from the north for tests! The tests were inconclusive, but he recommended I inject Clexane (I think a sort of mini heparin) for 6 weeks after giving birth. I did that, and didn't get a clot. I have no idea if I personally am at more risk, but now I'm pregnant again and they are recommending I do the same.

Definitely be aware of the risk and symptoms as the risk is significantly raised during and after pregnancy. I think it's something to do with the hormones, as there is also a raised risk from taking certain types of the pill.

So glad they caught yours Vickster, that must have been quite a scary experience.

[candj]

Good God, so glad they caught it in time! I only thought one was high risk for pulmonary embolism after c-sections (I've had 2) but am currently pregnant so very, very glad you posted this. Many thanks for posting this and take good care with the rest of your pregnancy. -C x

[Fuschia]

While you are pg your body starts to clot more easily to prevent excessive bleeding at the birth

Also pg women can be less mobile, esp if they have a CS

And weight of baby can compress a vein

PE is biggest cause of maternal mortality!

Clexane is a low molecular weight (slow release) heparin

[minder]

I had a blood clot on the lung two days after having my third child (she's now nearly 12).

King's discharged me the day after I had her. On the ward I had told them about a nagging pain in my groin, which they dismissed as afterpains and gave me paraceatamol. Was told afterwards this was probably the clot working its way up!

I suppose I was a low risk to them, three normal births, no family factors, not overweight, no illnesses. I was up and about as soon as baby was born and home to my other two young ones so I wasn't immobile or anything.

Anyway, I had the same symptoms as Vickster, shortness of breath, which ended up as terrible pain which I couldn't control and then (sorry to sound horrible) but coughing up some blood.

I ended up in hospital on a heparin drip for the next 8 days and prescribed warfarin for the next 6 months.

Baby obviously couldn't come with me to hospital and it was a real wrench not having her with me.

I was contacted by someone from the Lifeblood charity (which raises awareness about clotting) and I was interviewed on radio and attended some of their functions. They are still trying to raise awareness as a lot of people still associate clots with flying but it's very common after a lot of operations and obviously during and after pregnancy.

Glad you're on the mend Vickster.

[BEANIE1]

Hi Victoria, just wanted to send you all my best wishes but am so sorry to hear what has been going on. So glad that you are on the mend and thank you for your post. I am one of the winter club mums and we met a couple of months ago. I hope you can come along to the next meet up. Take care, Debbie

[duchessofdulwich]

im really glad this has been highlighted. well done for posting this story, who knows it might save someones life in the future.

[Vickster]

Thanks for all your messages, and the positive response to this thread.

Yes the response I received from all facets of the NHS was outstanding, I feel very lucky to have been diagnosed and received the care that I did.

I was interested to read that others have been in the same or similar positions. I would love to know your experiences of Clexane during pregnancy (both to you and baby), delivery and breastfeeding as these are obviously, on top of the effects of the scan worries, things that have been stressing me out. In particular, I have been told that Clexane raises the risk of haemorrhage, so my lovely home birth plans have been firmly shelved! Post or PM me if you don't mind sharing your experiences.

[Fuschia]

I was on a treatment dose of heparin (fragmin it was then) in my first pg, as you are, and also had to drop homebirth plan.... or even delivering in water. As I got close to birth my dose was split into two half doses... you can't have an epidural within x no of hours of a dose (6h?) though that wasn't my plan anyway.

Miss the dose when you're in labour, they liaise with haematology when you're in labour in case it goes on so long you need to take a dose. First dose after birth, 6h later.

I was then on oral anticoagulants - warfarin - for 3m (awful, reAL HASSLE WITH BIWEEKLY TRIPS TO kINGS FOR BLOOD TESTS) though I believe know they keep you on the injectables to reduce hassle. Soon after that I had a series of blood tests looking for underlying clotting disorders ... which i do have. So I need heparin if I fly etc etc

In subsequent pgs i have injected throughout, till 6w after. It didn't affect the twin birth at all... and for our new baby I am hoping for a homebierth.. the prophylactic dose is much smaller.

[Fuschia]

Neither heparin or warfarin affects breastfeeding, though I remember being told to watch the baby for any unusual bruises.

[Vickster]

Thanks Fuschia, really useful to know.

I am currently on 2 x 80mg injections a day, 12 hours apart, so I had expected that as soon as I went into labour I would stop taking it. Am hoping not to need an epidural or CS, as I know these are both problematic, but obviously you never can tell. Presumably they will scan me again post birth to check whether the clot has gone.

[Fuschia]

I'm not sure about that. I was told the damage left by the clot means it will look like a clot for a long time afterwards. They have a treatment regime (to the birth and prob for 3m afterwards) that won't vary anyway.

I was prepared for the possibility with the twins that unless we went for routine induction, if the timing was bad and I had taken my clexane too recently, then if we needed an emergency CS it would require a general anaesthetic... in the end I was induced as twin II stopped growing. If you want to be able to rely on having an epidural, a planned induction is the best option I believe.

I really didn't want that with DS1. when I was on the treatment dose, we're lucky the timings worked out, as it was a very fast labour with no warning! (Though I didn't want or need an epidural)

[minder]

Fuschia - I was told I couldn't breastfeed while on warfarin - I had been to some breastfeeding workshops as well before the birth because I was determined this time to breastfeed. I didn't with my older two (one was premature and wasn't latching on and with my second I had mastitis and gave up).

Maybe it depends on the warfarin dosage but that's prob why you were told to watch baby for bruises. Warfarin can cause internal bleeding if you have a knock or bump to the body.

[Fuschia]

minder Wrote:

-------------------------------------------------------

> Fuschia - I was told I couldn't breastfeed while

> on warfarin - I had been to some breastfeeding

> workshops as well before the birth because I was

> determined this time to breastfeed. I didn't with

> my older two (one was premature and wasn't

> latching on and with my second I had mastitis and

> gave up).

>

> Maybe it depends on the warfarin dosage but that's

> prob why you were told to watch baby for bruises.

> Warfarin can cause internal bleeding if you have a

> knock or bump to the body.

I fed on it for 3m. It used to be standard at Kings, warfarin postnatally. i am afraid there is nothing written anywhere about not bf oon the usual doses. You can't get pg while on it, mind you

http://www.breastfeedingnetwork.org.uk/pdfs/Anticoagulants_and_Breastfeeding_March_2009.pdf

[Fuschia]

http://www.ivillage.com/breastfeeding-safe-while-taking-anticoagulants/6-n-137161

Dr Arya said he offers Clexane postnatally now anyway, I think since he had his own child he realises how hard it is to troll up to Kings all the time for blood tests with a newborn in tow

[minder]

I notice this is information dated March 2009 - this all happened to me nearly 12 years ago now so advice was probably different! I was very depressed about this at the time but now, 12 years later, things change.

Oh well, my 4 week premature boy was 18 couple of weeks ago and is now 6ft 2inches and will be going uni next year.

My two girls 14 and nearly 12 also doing well.

All have never had any ill effects (allergies, illnesses) so I've been very lucky!

[Fuschia]

minder Wrote:

-------------------------------------------------------

> I notice this is information dated March 2009 -

> this all happened to me nearly 12 years ago now so

> advice was probably different! I was very

> depressed about this at the time but now, 12 years

> later, things change.

>

> Oh well, my 4 week premature boy was 18 couple of

> weeks ago and is now 6ft 2inches and will be going

> uni next year.

>

> My two girls 14 and nearly 12 also doing well.

>

> All have never had any ill effects (allergies,

> illnesses) so I've been very lucky!

I think they probably are less cavalier now about telling mnothers they shouldn't bf when there is no real evidence! I hav eheard of women ebing told it's contradindicated, esp in the US

[Vickster]

It is certainly not recommended by the Clexane manufacturers in the leaflet that comes with the drug, hence my question, but I too had read the breastfeeding network advice and my midwife doesn't seem to think it is a problem.

[Fuschia]

Vickster Wrote:

-------------------------------------------------------

> It is certainly not recommended by the Clexane

> manufacturers in the leaflet that comes with the

> drug, hence my question, but I too had read the

> breastfeeding network advice and my midwife

> doesn't seem to think it is a problem.

Clexane really ISN'T an issue (it's proven safe in pg after all) It's only warfarin where in the paat it was recommended not to bf on it. I think the notes re clexane warn against using it in pg even? That's just the manufacturer covering themselves, they can't test on pg or lactating women remember.

But many hunbdres of thousands of women take it postnatally... it's usual for a few days after a CS, for instance. Don't worry!