PE comforting words of wisdom

[Toliveandletlive]

This might be long. Had my dd, elective section due to first being very tricky. Was doing not to bad. Ended up in hospital 3 weeks later with an “inflection” I use quotes because that’s what they put it down too as they couldn’t find the problem. Was discharged two days later. 2 weeks later ended up back in hospital as I couldn’t take a deep breath properly. Turned out I had a pulmonary embolism. Clots on the lung. Spent 8 days in hospital as had a little damage to the lung that was deprived on oxygen due to the clot. Out now and I am not coping well at all. I’ve cried everyday since leaving even in hospital I cried everyday. I’m not functioning well at all. I’m terrified and living in fear everyday of just dying. I feel so disconnected to dd which just came on suddenly after getting home. I am seeking support and have support at home but I just can’t seem to get my head round what happened and no nothing of PE’s I feel like I’ve been told I’m dying or going to die and have just become so hollow and disinterested in anything I wake up terrified when I have a pain. Even though I’m still on injections so know I’m probably safer than most. I’m sad of being sad and I’m sad of who I’ve become and I’m sad that I can’t live a normal life again. Any support please I need some comfort.

Hi @Toliveandletlive you sent me a DM but I can’t reply on my phone for some reason so putting it here instead!

Oh I’m so sorry to hear that. I haven’t posted for ages and can’t remember what my situation was – I had pulmonary embolisms in both of my pregnancies. It was very scary at first but I was quite blasé about it by the second time! It hasn’t affected me that I’m aware of long-term – I’m not on blood thinners anymore. I do go to the doctor more readily than I would have previously if I feel any kind of weird pain in that area or if my breathing seems a bit unusual, and I’m classed as higher risk so get called up for covid boosters/flu jabs but I’m quite happy about that. Hopefully they’ve said if you do need to stay on blood thinners long-term you’ll be able to move onto tablets rather than the injections? I hope you can get some reassurance from your doctor anyway, definitely sounds like you need some more support.

@Toliveandletlive thank you for your reply and getting back to me. So sorry you went through this during both pregnancies, your a superhero. How long did it take you to recover? I had severe pain when diagnosed. A lot better now but still sore when I inhale. X

Hi @Toliveandletlive just to show some solidarity, I am pregnant and had a DVT and pulmonary embolism 3 months ago, early in the pregnancy. I’m still not back at work full time and apparently still probably have multiple clots on both my lungs (as I still have on and off problems with getting a full breath, which is scary).

Obviously for me the baby hasn’t arrived yet so we’re not in the exact same situation, but the feelings of fear, worry and sadness resonate. I also get fed up of being tied to twice daily injections and the massive bruises that come with it!

It’s apparently very normal to feel this way after a PE - the Thrombosis UK website has a whole section about it. https://thrombosisuk.org/patient-information/coping-with-worry-after-a-blood-clot/

In terms of the fear/worry it helps me to remember that I was in a lot more danger the day before I went to A&E (I ignored the symptoms for two whole days!) that I am now that I’m on twice daily blood thinners.

Thinking of you.