Suspected PE / chest pain.

[mygreeneyedboy]

I just had my booking app (9 weeks ish with DC2). After my c section with DS I was allowed home, but within a few hours (of walking up and down stairs, etc) my chest was hurting. So I rang up the ward to see what they would suggest (very innocently thinking it might be something like peppermint tea!) but they said I needed to ring 999 immediately. So we did. Apparently I had a suspected PE and in A and E was started on treatment blood thinners as a precaution, although they were beginning to think it was a false alarm. Any the next day (or maybe the day after?) I had a CT scan which showed up all clear, but was kept on the blood thinners anyway. Chest pain continued to plague me for a few weeks, normally with exercise, especially walking the stairs.

Anyway. Apparently because of this history, the midwives want me to see a consultant and start aspirin at 12 weeks. Is this necessary? I'm actually moving country between 12-13 weeks so I'm sure the new country will have their own say.

But do I really need to be this cautious when it might not have even been a PE?

Hm. I don't know about this regarding your particular history. But I was told to take aspirin from 12 weeks as well, purely due to my high bmi. I have no history of any medical problems at all but they said it helps with blood flow to the placenta in my case. Obviously it's a completely different scenario for yourself though! Just wondered if this is a new 'thing' for them to suggest!

Thanks plonkie - I had never heard of the idea before - can't find anything googling / maybe I'm looking wrong! My BMI is low, my blood pressure is low. I presume I'm not in a high risk category for a clot - apart from the fact that they thought I might have had one..

I've found a bit googling but not much! I mean I suppose it makes sense for them to suggest it in our situations (ish!), but if you're like me I've been very loathe to take something that I don't necessarily need. The research I did indicated an aspirin a day wouldn't be harmful to the pregnancy, but I only took it for a few weeks before stopping at week 20 after my scan showed all ok.

Just being pregnant increases your risk of DVT/PE. As does any operation. And if you have a 'history' they may well take a better be safe than sorry approach.
When they saw you for the PE did they do any other tests? Arterial bleed - blood test where they stick the needle in almost veritically and it usually hurts a hell of a lot? Any abnormal bloods? Afaik the only way to detect a PE 100% accurately is a VQ scan - you inhale radioactive air and they inject it...they can compare the lining of your lungs with the blood supply) is that what they did? Or was it really a CT scan? (Were you breastfeeding or was it a small hospital -wondering why they went down a less 'toxic' route of a CT scan?)

I would say that I have just been told (by a haematologist -not my neighbour!) that latest research is that aspirin doesn't work as a preventative medicine for DVT. (But it does still seem to be effective at preventing miscarriage in people with clotting disorders.)
I have a history of DVT/PE outside pregnancy -throughout both my pregnancies I took aspirin and did blood thinning injections and had frequent growth scans.
Remember a PE can kill you...and for the baby a tendency to clot can cause miscarriage and even late foetal death....

I would be back and asking more questions...

Just to correct the above poster, a CTPA - a high res CT - is more accurate than a VQ and more able to detect PE, but neither is 100% accurate. A VQ is however more often done in pregnancy due to the slightly lower radiation dose.

If you have any history at all of previous clot, the UK guidance is to put you on low molecular weight heparin injections from onset of pregnancy until six weeks after delivery. This includes even if the history is not 100% but likely. See www.rcog.org.uk/globalassets/documents/guidelines/gtg-37a.pdf

Thanks London - good to be corrected -and I didn't word that very well.
(I actually do know VQs aren't 100% accurate but afaik they are pretty good -better than the alternative that was an xray...which got me most likely mis-diagnosed as having pnenumonia rather than a PE many years ago!)
And interesting. Do you also breath in radiation for a CTPA? Are they commonly available?
I've only had VQs looking for a PE - last one a couple of years ago at a majorish Scottish hospital so I would assume that was the best they could do there? I had a CT there too a few months later but that was looking at my pancreas/liver.
(I was amazed at how much better they were from a patient pov - previous CT was 20+ yrs ago to look in more detail at an existing DVT (followed by a venogram at another bigger London hospital as the (old school) surgeon didn't believe the results of the CT scan ) first one took absolutely ages - so long it was hard to lie still for - I had to wear a tampon, drink dye, they injected dye and I had dye pumped up my bum ...no orifice left unmolested or dignity left - recent one was just an injection...pretty sure the nurses said they never needed bum dye anymore -think I was just so relieved I didn't retain the information!)

Sorry thread hijack -but London if DVT/PE are your field - what do you think about the aspirin/DVT research?
(think it is a collective data analysis - not the result of new raw research -haven't got round to looking into to it yet but the first hits on google threw up articles saying it was effective )

Oo some of this seems a bit over my head unlucky and london !! I only had a CT scan, they were debating about what kind of dye to use. I was pretty out of it as I had just been given morphine for a heamatoma (spelling?!) on my c sec wound. I remember something about debating the radioactive dye - and being told it would mean I couldn't breastfeed. I then spoke to my mum, who got the wrong end of the stick - thinking it was certain I was having the radiation dye. So she rang her sister (my aunt and one of the midwives on the ward) having a go. Anyway miscommunication got in that it was me who was refusing it (I was clueless!) so I ended up with a non radioactive dye for the CT scan. Didn't have a tampon like you unlucky but I had all the maternity pads on still.. Also the dye went into my arm.. They were only looking at a lung clot, no where else.

Interesting you Mention haematology. My uncle is head of a haematology department in a major hospital so I'll ask him about it. I don't remember having bloods done - but that's probably because I had so many done around that time! I'll also double check with my aunt about the outcome of my suspected PE (she probably was in contact with the doctors). I probably need to get the story straight before we move country in a few weeks...

Good luck - and you can ask to see your own notes if you want to - you have to put a request in and someone will sit with you whilst you do - it is free unless you want copies of things then it can cost up to £50 - that would be for all your notes -which you might want to take with you. My notes (hospital and GP) got lost for years after I relocated in the UK.
I would strongly recommend you know and understand your own medical history and don't be afraid to ask questions...
(and I didn't 'need' the tampon it was just so they could distinguish between different areas better. They do show up remarkable well. I had an ultrasound on my period once (looking at my veins) and the radiographer had a couple of students in. They spotted and showed them my tampon in place on the scan -how clear an image it was etc - I was mortified but at the same time fascinated - a lilet and you could actually see the grooves in the side)

So both CT & VQ involve radiation.

CT not recommended as first line in under 35s as increased risk to breast tissue and puts your life time risk of breast cancer up.

VQ lower radiation dose to breast, though if pregnancy increased dose to fetus (as you can screen baby with lead in a CT scanner)

You can have a perfusion scan only if pregnant accepting possibility of needing a CT if unclear.

You would know if you had a CT scan - you lie on a table and go through a donut. You should have had some counselling about radiation and breast tissue but not all centres are good with this.

A VQ is a gamma camera test and involves inhaling and an injection. A normal VQ is pretty conclusive as are a very abnormal. The ones in between are much more difficult to interpret.

If you definitely had a PE ruled out there is no reason for you to be on prophylaxis and prophylaxis should be low molecular weight heparin anyway. Ask to talk to a doctor.

Oops unlucky - I think it would be quite cool have students in - had a student in for my 20 week scan last time and was great as we had an extra long look.

mads definitely had a CT, I remember the donut. Being slid into it, told to breathe at certain times. But there was definitely no radiation, due to my mum's fuss about ruining breastfeeding (I wasn't pregnant, I had a 2/3 day old baby), everyone made it very clear what I was having was safe. I had literally just turned 21 (the day or so before!) so confused about the 35+ risks.. Apparently there was a choice of dyes.. The radiation or non radiation.

Seems so odd. Who do I ask to see my notes? Do I book a GP appointment?

A donut is a NMR/MRI too! But I don't think you would have had that and you don't get dye irrc.
To see your hospital notes contact medical records at the hospital you were at - or go in and you should be able to pick up an application form to complete.
And for your GP notes just ask at reception and they should be able to arrange something. (I think I had to pay £10 at GP but many years ago so can't remember properly). I would look at GP notes first as the hospital will (ime) write a summary letter to your GP - pretty sure even if you weren't referred through your GP and they are usually easier to understand but might have less detail.

Best of luck

Mads (avoiding asking about the aspirin/DVT research thing) but I may or may not had/have a 'clotting disorder' (APS -long story) and I was treated as if I did - and I think (haven't checked recently - so could be wrong now in light of the 'new' research) that LMW heparin AND aspirin are still recommended as the best way of preventing miscarriage/maternal clots/ placenta problems/foetal death in APS patients by St Thomas' - who were, at least at one stage, arguably the world experts in pregnancy & APS.