Pulmonary embolism

[Elskerdeg]

Have you ever had one? Mine was recent and I feel very scared and can't find many people who have had one to share experiences with.

@Cottagepieandpeas
Thanks for sharing another recovery story, happy to hear you are well now.
I definitely relate to the worries afterwards. I have been A and E twice since my diagnosis!

@crushedgrape
It really is such a huge shock isn't it. Glad to hear you have been doing well since. It's really helping me to know that the fear does go, eventually, do thanks

You will get better I promise, my doctor - who was guilt ridden having ‘checked’ for a PE when I went in the day I was first gasping for breath- arranged it! They were great when I came out of hospital, told work that as I couldn’t breathe or walk I wouldn’t be back for some time.

@Sportsnight
Weekly blood clinics? That's so often! Did they say why you had to come in so often? I remember the first six months of babies life well (I hated it, give me 100 toddlers over one baby!) and the last thing you need is extra appointments so well done for getting through that.

Sounds like your aftercare was a lot better than others here. I've been told they won't be doing another scan due to the risk that comes with each scan, I hadn't considered an MRI though and might ask about that down the line.

Birth is about 5 months away and honestly I am ridiculously terrified which isn't helping!

Thank you for understanding. It really gives me hope that you can get over the fear.

[quote Elskerdeg]@Rosebel
What symptoms got you rushed back in?
It's such a mad illness, and really plays with your head that you don't know if you have it again or not without a scan. I felt really invaded when I found out if that makes sense?
Don't blame you for staying on the thinners, think I would have too[/quote]
I went to the bottom of the road and back by which time I could hardly breathe. Luckily my DH was at home and rand 111 who said go to hospital now.
Horrible experience and I really can't understand why they don't give you a scan before taking you off the thinners which would surely be the safer option.

I hope you don't mind me jumping on this thread. Wasn't sure whether to start a new one but our situation sounds so similar. A week ago my gp sent me to hospital due to breathing becoming progressively more difficult. Long story short, I have 2 large clots on my left lung and 1 on my right . I was discharged after a couple of days and injecting daily from now until birth and beyond (never thought I'd manage them myself!). But I'm struggling mentally. Terrified of every twinge and cough. Overthinking whether the drugs are working or not. Checking I'm on the right dose via Dr Google. Anyway, just thought I'd drop in and say I found this thread helpful and also if it hadn't been for a few PE comments on Mumsnet I may well have continued to think that the breathlessness I had was just a pregnancy thing! Scary.

Yes. I was 16-18eeeks pregnant and got covid, vue covid pneumonia and blood clots on lungs, it was awful and have to have blood thinning injections twice daily in the stomach, wasn’t pleasant but tbh got used to it and better than possible alternative, I’m almost normal now, have to say I struggle with breathing every now and again but on the whole its a lot better. It can be very scary especially when you’re pregnant but if I feel worried or off at any point call your midwife xx

I had a PE with pneumonia and other thrombosis. This was a long time ago. I was on Warfarin for 9 months, My lungs are OK now although I nearly died, and have a higher risk of clots but I recovered completely. I have a gene Factor V Leiden, it's in 5% of Europeans, and have passed the gene on to family unfortunately but it doesn't always cause any problems. Oral contraceptives, HRT are not advised any surgery have blood thinners. There's a website called Stop the Clot (American but stories from everywhere) www.stoptheclot.org/

I have, about 10 years ago when I was early 30s. Mine were most likely caused by the pill, which is v rare thankfully. Small clots in both lungs. I was on warfarin for 6months, reduced to 3. No problems since.
It definitely messed with my head at the time. It was incredibly frightening knowing that my body was doing something that could kill me. One hospital bod said something very helpful and reassuring though, which was to remind me that it was also doing all it could to help me, as my lungs were doing their job by filtering the clots so they didn't go to my heart or head. I remember feeling very vulnerable and like I wanted someone to look after me, which is very unlike me. It took a while after I was physically better for my head to catch up.
If you are on anticoagulants after birth, remember that period blood will be 'thinned' too. I had a biblical period on warfarin and nearly passed out on the way to work. As most clot patients are about 40 years older than I was, its not something on their radar to warn you about.

I had one back in May 2018. I'd had 2 weeks of being increasingly breathless,but I didn't want to go to the doctor as I was sure it wouldn't be taken seriously. I was extremely overweight at the time,plus I have several chronic health conditions,and had the feeling that it would just be blamed on me being unfit. Eventually my DD persuaded me to go to my GP. DD said that I sounded out of breath just talking on the phone.

Thankfully,my GP did take it seriously,suspected a pulmonary embolism,and sent me straight to A and E. I was kept on an observation ward overnight, given an injection of clot-busting medication and taken for a CT scan first thing in the morning. It turned out I did indeed have a clot on one lung,which had broken down,thanks to the injection. I was discharged with a prescription for Rivoroxoban 20mg,which I now have to take for life.

One good thing did come from this episode though. It gave me such a scare that I decided that I HAD to lose weight,once and for all. I was 55,and the way my weight was going,I wasn't going to see 65. Since then,I've lost 7 stone (98 lbs),and feel so much better for it. I still have another 3 stone to go,but in some ways I'm grateful that I did get the pulmonary embolism,as it kick started my weight loss.

Not a pulmonary embolism but was diagnosed with cerebral venous sinus thrombosis (blood clot in brain) last year while pregnant. I think the main thing is to know you have the clot as once you are on blood thinners things can stabilise. The danger is when you don't know you have it. It is scary but I made a good recovery and am now pregnant again (still on blood thinners and also aspirin) but consider myself in good health. You will get through this xx

@AramintaLee

Yes I've had one. A few millimetres from entering my lung.

Hope you're okay

A pulmonary embolism is in your lung. If it wasn't in your lung it wasn't yet pulmonary.

As you are being treated that's the way to keep you safe. It's if clots are undiagnosed then they are dangerous. Being in the system you are monitored. Good luck.

Thanks everyone. Follow up is fairly minimal which isn't helpful. I've got my 16 week Midwife appointment this week but it wouldn't surprise me if they don't even know it's happened . It's going to be a looong pregnancy.

You've been lucky they found it
Three people close to us had them and died.
Please follow all medical advice and any worries go get checked out

@pipatron drink plenty of water and keep moving.

I forgot I had made this thread until just now and hadn't seen your reply. How are you doing now?

Yes, I had a massive bilateral (saddle) pulmonary embolism back in 2018 after leg surgery. Was in ICU circling the drain for a while (heart swelled up like a balloon as the blood had nowhere to go). Was fitted with an IVC filter (now removed - not a pleasant experience) and was on Rivaroxaban when discharged for 6 months - was taken off it as I became severely anemic and as it was a provoked PE was deemed at lesser risk of developing a new one (although still higher than the general population).

I am left with somewhat decreased exercise tolerance and some heart palpitations (have been signed off by the medics though so nothing that needs treatment), the psychological fallout was severe through and have been left with PTSD, which although a lot better than it was after treatment still resulted in me leaving a degree I was in the middle of as it was in acute healthcare (placement in the same hospital) and I started getting panic attacks.

3rd biggest cardiovascular killer after heart attacks and strokes - the symptoms need publicising more.

I had a couple of huge PE after abdominal surgery about 12 years ago. I had Clexane jabs initially then spent a year on Warfarin. I just wanted to join in to say that as far as I am concerned I made a full recovery, no trouble since.

My son has had two different " episodes" once when 21 and once when 26, no idea what caused either. He is now on warfarin ( he was on rivaroxaban for about 6 months but it made no difference!) and has ongoing check ups as the clots have also damaged his heart. Very scary at the time but, after 18 months, things seem to be improving.

Hey! Im doing well thank you. Still injecting everyday and will be until at least 6 weeks post partum. My breathing was back to normal quite quickly. I'll be nervous to stop taking the medication come September. Just have to keep telling myself I know the symptoms and will be taken seriously. Bit nervous about the birth and coming off the thinners beforehand but getting good support from consultants at hospital. Thanks for checking in 😊

@pipatron
That's great! Just checking in as we are in such similar positions. I'm due to give birth mid/late June (I have gestational diabetes and there is talk of an earlier birth). Glad you've had good support, have you had the meeting about giving birth already then? I know the plan for me is to switch the type of drug beforehand but not come off it until just 24 hours before my c section. All quite nerve wracking, just hoping she stays put till then!
Definitely also nervous about coming off the thinners too, especially as my breathing is still horrendous. Have they spoke about any follow up tests with you?

Haematologist didn't suggest any follow up. The discharge notes I have from them say no cause found so they're putting it down to pregnancy. Do wonder if covid booster + being pregnant may have had something to do with it. I'm consultant led because birth was difficult last time and after all this I've decided to go down the elective c section route. I've just been told to stop the Tinzaparin 24 hours beforehand, they won't change the medication. It's all a bit much isn't it, I'm definitely paranoid about going into labour early 😖

Oh that's a shame, it's weird how different people seem to treated with this. I see a clinic of a hematologist and pregnancy Dr about once a month. One of the 2 hematologists I see thinks mine was due to the COVID booster (I got symptoms within two weeks), the other is convinced it's just due to pregnancy. Means I'm not sure what to do if I get offered another booster.... I paid for a test to find out if I have factor v Leiden and I don't have that either which is a relief I guess. Shame they wouldn't test for it though.
How old is your first? Mine was an emergency c section and definitely put me off natural birth for this one!

She'll be 3 when this chap arrives in the summer. Yes mine was emergency too, after 30 odd hours of induced labour 😣don't fancy all that again!