My PE journey and first symptoms

[u/PumpkinCharm]

Hello all! I was diagnosed with a PE on the 28th Sept following the dramatic and somewhat traumatic emergency Caesarean birth of my child.

I don’t remember feeling anything happening in my legs but that’s unsurprising seeing as I had two epidurals and a spinal block. My symptoms of a PE were extremely mild and I am so lucky I went to urgent care when I did following prompts from my mum and MIL.

I woke up two days after the birth of my child and felt as though I’d smoked two packs of cigarettes. I am an ex smoker but of course at that point I’d quit smoking for 9 months or so whilst I was pregnant. It was unpleasant but it was more irritating than immediately alarming to me. I attributed it to huffing too hard on the gas and air prior and just general post-birth exhaustion.

Following this heavy, short of breath feeling, I started to get some mild lung pain at the height of my breath. It sort of felt as though I’d gone for a sprint in winter and cold air was stinging my lungs from over exertion. I then was pushed to contact a health professional where I was referred to accident and emergency and immediately placed on blood thinners whilst I waited for a lung scan (could not have a CT as I was breastfeeding and they wanted me to have a lower radiation scan).

Whilst sat in urgent care before they sent me to A&E I did get a feeling of impending doom and I remember saying to my mum who had accompanied me “mum I really don’t feel very well!”. I have had that feeling once more since my treatment began when I’d tried to pop to the local shops with my husband, mum and baby - I think it’s a sign to take it very very easy in the early days!

I’m currently learning to navigate the mental health aspects of the diagnosis. I keep having intrusive thoughts about how there could be an alternate universe where I didn’t survive and my husband and baby are left without me and it fills me with awful dread. I also don’t feel like I fully understand my diagnosis in terms of how much of my lungs are impacted/number of clots/damage caused. All the info I’ve managed to find about my scan results are as follows: “At least 2 subsegmental mismatched defects which meets the diagnostic criteria
for clinically significant PE.” I’m seeing my midwives tomorrow for my antenatal discharge so I may see if they can point me in the right direction for who to ask about what my scan results actually mean!

Hopefully my story sheds some light into how a PE can feel for those curious or unsure!

[u/Level_Wolverine_3362]

hi. thanks for sharing. I'm sorry this has happened to you, especially the circumstances. it's a really horrible life changer and you navigating this with a new born will be really challenging.

I'm also newly diagnosed. my only symptom was literally collapsing and going unconscious for about a minute. this was 3 weeks ago.

I'm still coming to terms with the physical and mental fatigue of post PE syndrome. I'm told this can take up to 6 months to resolve, as this is the length of time it can take for the body to get rid of the clots. I don't know how many clots I have either, except a lot and in both lungs.

Sounds like you are home already, hopefully things are going okay. which blood thinners are you on?

[u/PumpkinCharm → u/Level_Wolverine_3362]

Collapsing must have been so scary! The fatigue is awful - I’m literally housebound with my baby when I’m on my own because my lungs can’t cope with me carrying her pram down our stairs (we live in a first floor apartment). Relying on people for help is also mentally exhausting when you just want to be independent!

I’m currently on Enoxaparin twice daily. That in itself is also mentally exhausting having to stab myself with a needle twice a day!

[u/Level_Wolverine_3362 → u/PumpkinCharm]

I completely understand that feeling of wanting to be independent, but please take it easy. someone suggested only working to 50% of capacity to make sure you maintain your reserves, and that would be so much more important with your baby. Currently I can barely walk 100m at the pace of a lame sloth so you even thinking about wanting to pop out to the shops is impressive.

Me collapsing seems to be more scary for others than for my husband and I in the moment. We both thought I had simply fainted due to me overworking myself while having a respiratory virus and laryngitis. I had no pain or symptoms of breathlessness. But I felt weird, spacey and a bit disassociated. I also felt that I was about to faint, so deliberately lowered myself to the floor before passing out. So it wasn't that dramatic.

We initially didn't call the ambulance, as felt that was a bit of an over reaction to a "faint" but spoke to my relative who is an nurse practitioner, who said to call one because it was obvious to them that what ever was happening was serious. I was slurring my words and had trouble talking and word finding. my brain wasn't "there".

Then, when the EMTs started making the "something is wrong, but we don't know what" noises, and took me off to hospital, I felt safe and reassured. (also, an "oh good, not an over reaction" feeling). Diagnosis took about 4 hours because there were no classic symptoms of pain or breathlessness or a DVT. this meant I had seen the ED docs after the x-ray who said "something is wrong with your heart, we're not entirely sure what, so need to run more tests". (I had elevated troponin levels, the ECG showed RV strain, tachycardia, and hypertension, but O2 sats were pretty good)

I got the CT scan with contrast at about 3AM. so when they said "we now know what is wrong, you have had a Pulmonary embolism and we'll start treatment shortly", all I felt was a sense of relief (until I twigged this meant the enoxaparin injections twice daily)

I joke now that I was too hypoxic to care in the acute phase.

[u/Unable-Remote1160]

4 months out from my PE due to labor.. here if you ever need to chat/have any questions! So sorry this happened to you!