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Any experience of a pulmonary embolism during pregnancy?

(6 Posts)
DigestivesWithPhiladelphia Wed 26-Sep-12 20:42:27

Hi.

I am 22 weeks pregnant with twins and, after a v/q scan today, was told I have PE's in both lungs.

It has been a long week, trekking back & forth to the hospital with my 18 month in tow, and I was a bit shocked by the positive result as every Dr I've seen said they thought a PE was very unlikely. My only symptom has been shortness of breath (which has been going on for over a month) and a slightly raised heartrate. I also have no risk factors apart from being pregnant.

The A & E Dr. who gave me the results said that the clots are in "the best possible place" as they are at the end of something (she was talking about branches on a tree, but I was a bit shocked at the time & can't remember the full description!) in my lungs and won't move. She said there are no clots in the main passage between my heart & lungs. She was unable to answer a lot of my questions and said the nurse in the DVT clinic would answer them.

So, off I went to the DVT clinic. The nurse there was lovely but he was unable to answer my questions & said they will be answered by my OB & a heamotologist (don't know if I've spelt that correctly, sorry) who I will see in clinic within 2 or 3 weeks.

I've left the hospital with my fragmin (I've already been taking this for a few days while waiting for tests) and I fully understand how to administer it and how it works.

However, I don't understand how much 'at risk' I am now i've started treatment. The nurse said it reduces the risk a lot but couldn't give me any figures relating to this.

He told me to ring 999 if I suffer pain or have more severe shortness of breath. I'm reasoning that I'm probably quite safe as I've been allowed to leave the hospital and won't be seen again for a few weeks. But still, I am tired and a bit emotional and I can't help panicking about dying during this pregnancy/what wil happen if I need an emergency section & I start to bleed/the risk of dying after the babies are born...

I also don't understand how I will be monitored to assess whether any new clots have formed. Will I be scanned again? Will they just 'wait & see'?

I know I'm probably over-reacting a little tonight but I can't help feeling a bit sorry for myself sad and feel a bit annoyed that I was sent gone without the opportunity to get some answers to my questions. I have unfortunately turned to google & have now convinced myself that I have a 3-8% of dying from a clot, even though I have started treatment. Hopefully I've calculated this wrongly!

Any information from someone who has been in this situation, or who knows more about it, would be helpful please.

mummy2benji Wed 26-Sep-12 22:06:02

Hello - thought I'd try to answer your Qs for two reasons, firstly because I had chest pain at 28 weeks and had to have a CT angiogram to rule out PE (I was lucky as it was negative, but I understand the worry), and secondly because I'm a GP and also worked in Obstetrics for some time.

The main risk with PE is if it is undiagnosed and therefore not being treated - then there is the risk of clots breaking off and causing potentially life-threatening problems. I have seen these occur, but never in a patient already being anticoagulated, as you are now. In non-pregnant patients we usually anticoagulate with warfarin, as it is oral rather than needing to be given by injection. That is harmful in pregnancy, which is why they have given you fragmin, a type of heparin. Being on this is actually better for you in pregnancy for other reasons - one is that with warfarin, your blood levels have to be carefully monitored as it is possible to over or under-dose on it. If you under-dose then your risk of complications from the PE increases, as your blood isn't being thinned as much as it should be. That isn't a risk with heparin - the injections ensure that your blood is suffciently thinned or anticoagulated. The other advantage with heparin is that it is quickly reversible, unlike warfarin, which is a bit of a nightmare in patients needing emergency surgery. If you needed an emergency Caesarian it might cause the lab a headache in that they would need to dole out some expensive clotting factors and treatment to reverse the effects of your heparin, but the surgery itself should still be able to go ahead safely - Caesarians are quick, then they would put you back on the heparin again.

With you now being on anticoagulant therapy, you should be safe from the risks of PE complications, so try not to worry - easier said than done, I know! Like I said, I have not in my career (a decade in hospitals and GP) seen anyone suffer a subsequent PE who was already being adequately anticoagulated. I hope that helps a little and hope the rest of your pregnancy goes more smoothly smile x

Badsquishy Wed 26-Sep-12 22:07:12

Hi digestives, I hope google hasn't freaked you out too much!
I have had PEs in both lungs, but never in pregnancy. I was diagnosed with a clotting disorder so have had to be on fragmin for both of my pregnancies. I had a blood test every few weeks to make sure my clotting levels were not too high or low and saw my hematologist regularly.
I was told not to inject myself when I went into labour because if I wanted an epidural it had to be 12 hours after my last jab. I didn't lose a lot of blood during the the birth, but the bleeding after went on for quite a while!
I felt very well looked after and very safe during and after my pregnancies and am even considering going through it for a third time!
I'm sorry if I have rambled a bit or not answered any of your questions, but I just wanted to share my positive experience with you.

Hope that helps

mummy2benji Wed 26-Sep-12 22:08:35

Sorry, one Q I forgot to answer - I doubt they would scan you again routinely as the risk of having a subsequent PE when you are on heparin is very small. They don't usually rescan people once they have been started on anticoagulation.

zipzap Wed 26-Sep-12 23:07:25

Hi OP, I've had a dvt after pregnancy rather than PE during, but still went through the OMG am i going to die from a clot, will I get more, what's happening, arrrgggh stage.

I was on fragmin just to start with and then on warfarin afterwards which was a real nightmare - as mummy3benji said they have to check you regularly to make sure you keep in the right levels with it - several times they messed mine up and gave me doses that were wrong and left me unprotected and therefore worrying lots.

I found that it was really difficult to find good information - particularly stuff that was relevant if you were pregnant or had just given birth, it was all aimed at people that had either had ordinary surgery or who had been travelling, occasionally at people with a clotting disorder.

One thing I did find out at the end (having ended up taking warfarin for 9 months instead of 6 or 3 (different people told me I needed to take it for different lengths of time!) was because apparently your body reacts differently to warfarin if you are postnatal than if you have a clot under 'normal' circumstances. I found a single reference to a study someone had done that had worked out better dosage protocols for women that were postnatal - my doc had just been treating me using the standard one.

Sorry, just realised I didn't say - the reason I'm mentioning all this is that I was also told that if I'd had a dvt before giving birth I'd have been given fragmin and then been switched over to warfarin afterwards.

If you can cope with the injections, don't know how long they will want you to stay on them for, but it is worth staying on them for as long as you can rather than having warfarin. For me the warfarin was a real hassle - not only the daily visits to hospital to start with to get blood tests done (with a week old baby in tow, not ideal, especially when others in the waiting room are puking their guts up or there with other nasty lurgies plus nowhere easily to feed or change the baby and as he was jaundiced he needed lots of feeding, I couldn't leave him behind at home with dh and sometimes I could be there for 3 hours just waiting for them to do the blood test) and then regular visits to the gp later on for weekly blood tests. And throw in the fact that they had real problems prescribing me doses that kept my levels right - unnecessary stress and hassle all round. I also had more illnesses in that 9 months than I've ever had and I'm sure that it was just because I was at the hospital or surgery so much and therefore exposed to so many more bugs than I would be normally - and it's a vicious circle - because you have to go back even when you are poorly and run down, you then pick up more stuff more easily!

I know I found it really difficult to find out good information - everybody kept referring me back to each other, and nobody seemed to think that the effects of pregnancy made a difference which I am sure they did - if it happened again I would be questioning them a lot earlier and getting them to point me to good pregnancy-specific references and make sure that they went and double checked themselves too as it seemed (at least where I was) that they didn't see many pg women and therefore didn't know much about it.

sorry, this is all a bit of a ramble, but hopefully you can get some sense out of it!

and good luck with the new dc when they arrive and the rest of your pg, at least you are now being looked after so should be safe!

DigestivesWithPhiladelphia Thu 27-Sep-12 20:48:13

Hi, thank you so much for your replies, they made me feel a lot better when I woke up this morning.

mummytobenji - thank you for answering those questions. That is reassuring especially about the c-section if I have to go in as an emergency for any reason. I was panicking that if there isn't time to get the fragmin out of my system, that I will just bleed and no-one will be able to save me <must take a deep breath & stop picturing this type of event!>

badsquishy - good to hear from someone else who has had clots in both lungs & is well as well as having had a safe pregnancy & birth. It's also reassuring that you are thinking of doing it again! I keep telling myself that my consultant will have seen other women in my situation & will hopefully not be as alarmed as I am at the thought of delivery.

zipzap - all that to and froing to the hospital sounds awful! Poor you to have done it for so long with a new baby as well. Are you totally better now? I have made a mental note now to try & avoid Warfarin if I can. Our main hospital is half an hour away, it's difficult to park & I will have newborn twins plus my toddler to look after - I think my heartrate really would be through the roof if I had to go there for blood tests every day!! I don't mind injecting myself at all so I'm hoping I might be allowed to stay on the fragmin instead.

I'm still tired and out of breath but am worrying less about dying now, thankfully. There was a gap of 5 weeks between my first GP visit & starting fragmin, so I it scares me to think I was walking around with untreated clots. Now, at least I feel safe because I know the injections should protect me. The Dr said that in four or five days the breathlessness should ease off - I am really looking forward to that grin

Thank you again to all of you for taking the time to respond. There really doesn't seem to be much relevant information around, apart from lots of quotes about PE being the leading cause of maternal death in the UK shock. I just have to keep repeating to myself "those are untreated clots, treated ones don't kill people" and hopefully that will sink in soon and I will have a nice uneventful pregnancy & delivery.

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