Suspected pulmonary embolism [Edited by MNHQ at OP'S request]

[ronniemipperton]

Hi all,
I’ve done a search and read some of the threads that have been posted about this previously but thought I’d start a new one in case anyone has any recent experiences.

I went to my GP with chest pain (like an elastic band had snapped in my chest) and some shortness of breath on Wednesday morning. They didn’t seem too worried but sent me for some blood tests and called me back later that day to tell me to go urgently to hospital as my D Dimer was so high (I have since learnt that D Dimer is often very high in pregnant women, but anyway...)

I’ve had an ECG, more blood tests, chest x ray, have been put on blood thinners (aspirin and Clexane - hate the injections so much) and I’m going back this morning for a VQ scan which should hopefully confirm either way.

I just wanted to ask if anyone had any advice or experiences, and particularly any questions I should ask if it is confirmed as a PE? My main worry is if there’s still a risk if I’m on the blood thinners or if that means things should be OK, but I’m sure there are other things I should ask, I just don’t know what they are...

Oh and I’m 23 weeks - baby seems to be OK so far 🤞

No advice I'm afraid but interested in the responses.
I'm currently waiting on iron results at 10 days post partum as I've had a few periods of breathlessness/tight chest.
I'm not sure if they will be testing my blood for anything else though, but I'd like to think that if high D Dimer is a sign of a clot, that they will be testing for that too. If it's not iron, I assume I'll need further tests.
How long did your hospital tests take? Hoping I don't have to go in at all what with a 10 day old baby to look after.

@Frizzy1986 congrats on your new arrival and fingers crossed your results are fine. I did my initial blood test at the health centre at about 11am Wednesday and the doctor called me at 5pm and told me to go to hospital that day, so I got there about 6pm. Had more blood tests and ECG at about 7pm - they never gave me the “official” results from that but a doctor at 9pm told me it looked normal. X-ray was very quick, it shows up on your file immediately and then the doctors can see it straight away. I think the scan results take longer (I read a thread where someone said they had to wait in the hospital for 9 hours for the results) but hopefully you won’t have to do that. Good luck x

I was also 23 weeks when I had a suspected PE. I had an XRay and a VQ and blood tests. All negative. It turns out it was just pain from baby being in an awkward position - my ribs and back hurt for the rest of my pregnancy and I was always short of breath.

Thanks for the reply @OkayGo - did you have any additional monitoring after that, or did things go back to normal (aside from the pain)?

No nothing at all. They didn't even offer me any solution for the pain haha. Just put up with it.

I had this at 12 weeks, chest X-rays and vq scan all came back clear though. Hopefully yours will too. The clexane injections are horrible aren't they 🙈

Glad yours came back clear @moveitorloseit. Clexane injections are horrible, being injected with nuclear liquid is a walk in the park in comparison!

All done with the scan - was only in the hospital for an hour or so. I have to call back this afternoon for my results so fingers crossed.

Hopefully it's not a clot but if it is it will be managed by blood thinners.
I had a huge blood clot in my arm back in 2011 and had to take clexane
Twice daily for 6 months and I have to take it for life when flying.
As a result for precaution I have had to have clexane injections daily from 28 weeks to 6 weeks postnatally in both my pregnancy last year and this year. Having c section next week so not much longer left.
They really don't bother me but I've done so many times now. I mainly do in my thighs as my belly is so tight I have nothing to grab. I just jab abs push so quick it's over in seconds. I still occasionally hit a spot where the needle won't go in so just jab somewhere else quickly lol also I still sometimes get a sore one but the fact it's for a good reason makes me not mind doing them.
Hope your results are negative x

Thanks for sharing your experience @kelly14, that’s reassuring.

Still waiting for my results, have called a couple of times but they just say someone will call me back 😕

Finally called, it is a PE. Better get used to those syringes :(

So sorry to hear that OP. I have just gone through the same tests but I was fortunate that the VQ was negative. I have been diagnosed with pregnancy induced asthma and signed off work whilst the inhalers kick in.

I hope all goes well with the treatment. Stay strong xx

What was your d-dimer just out of interest?

Sorry just saw that PE has been confirmed. Nevermind!

I had a pulmonary embolism, admittedly not whilst pregnant, and whilst you’re on blood thinners I’m sure you’ll be fine. I was told that when I want to ttc then I will have to go on blood thinning injections for the nine months as those are the only blood thinners that they know don’t harm the baby. As long as your observations are fine and baby is fine, I’m certain you’ll pull through. It was so scary for me and even over a year later I still get scared, so bless you it must be awful whilst also being pregnant x

Obviously it will most likely have been your pregnancy that has triggered this, but maybe ask your doctor to be screened for thrombophlebitis factor v laden etc to see if you have any genetic predisposition.
For now just get used to the stingy injections and bruising I suppose I’m sure you’ll be off them soon after pregnancy and will be able to use something like warfarin or apixaban afterwards if anything. I am apixaban for life as a precaution and I’ve had little to no side effects apart from heavier but still manageable periods.

I'm 35 weeks pregnant and have been diagnosed with small PEs. The ones I have are very small and in an area of my lungs that don't really pose a risk. I had a chest X-ray first and then the VQ scan which is split into 2 parts. The first scan looks at the blood flow in the lungs. The second part focuses on the air in and out of your lungs. As you are pregnant they should only do the first part of the VQ scan as it involves using radiation. If the circulation part of the scan Is normal they won't need to do the breathing part of the scan (this is to reduce radiation).

Unfortunately for me the circulation part of the scan was abnormal so I had to have the breathing scan too.
I'm on clexane injections and just monitoring. I'm not sure on the treatment if the PE is more severe.

Don't be alarmed by the use on radiation. The risk is very small in comparison to a possible PE.

Also i wouldn't take any notice of the d-dimer blood test as these results are usually deranged during pregnancy.

Hope this helps!

Thanks @Justasconfusedwithnumber2, sorry to hear about the asthma but glad your scan was clear.

That’s reassuring @fairynick, thanks - will ask about thrombophlebitis factor.

@Holpop19 I had both tests pretty much at the same time - did the breathing part, had the scan done then they stuck the liquid in me while I was still in the machine for the next bit. It has been confirmed as PE though so good that they’ve got the complete picture. Treatment is Clexane twice a day plus aspirin, so manageable, just not much fun! Thanks for your advice.

Sorry I realised after I had posted that you'd already had the tests. Guess each hospital trusts have varying protocols but I'm pleased they've taken it seriously and you are now being treated x

Just wanted to post a quick follow up after having asked doctors my questions in case it’s useful for anyone who lands on this thread in the future (though I appreciate some of the answers aren’t that helpful!):

Chest pain has been getting more severe - is this normal?

They didn’t seem too worried about this but said to go to hospital if shortness of breath gets worse - I’m on the right treatment for the issue. It has been getting a bit less frequent so hopefully that means it’s working - pain is still very sharp though.

I’ve been mixing up words (hot when I mean cold etc) is this a reason for concern?

They said the clot is very unlikely to be affecting the brain so could be anxiety. I think this is probably right, I’m not doing it so much now I’ve had a bit more sleep and come to terms with it.

One of the places where I’ve injected has swollen up - is this OK?

Probably hit a blood vessel - should be fine but keep an eye on it (hard not to, the bruise is MASSIVE)

If I cut myself or start bleeding for another reason - will it be OK?

Apply pressure for a minor cut and don’t worry, go to hospital if it’s an emergency/lots of bleeding.

Will I have follow up checks to see if it’s working?

Yes - I have an appointment with a consultant in a month or so.

Can I keep going to the gym?

Yes but don’t go nuts and give it a week or so.

Any advice for taking injections when I need to be out of the house?

Avoid taking them out without a sharps box if possible. Shouldn’t be a major issue if I’m a bit late taking it.

Whooping cough vaccination - any issue with this?

Should be fine (bigger concern now is actually getting a slot with my GP!)

What happens when I go into labour?

This is what I’ll discuss with my consultant. They did say I might need to be induced at 37 weeks which sounds a bit terrifying, but I’m going to research it all before my consultant appointment so hopefully will be able to have a birth plan that doesn’t fill me with terror despite all this. I’m definitely not using the lovely birth centre at Lewisham hospital though :( (it’s only for straightforward low risk births).

Side note: I’d had two miscarriages before this pregnancy and was taking low dose (75mg) aspirin up to 12 weeks. I stopped because my midwife told me to. The doctor in the hospital told me I shouldn’t have stopped. So, if you’re on aspirin because of miscarriage, my advice would be to stick with it.