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.

Sorry OP
Just read the full thread - sound covid related - especially the mini clots.
Eliquis or apixaban is an excellent treatment and will not only help the acute phase but has good data for long term prevention.
Pregnancy is also a risk factor for VTE.

I'm sure there are thrombosis patient support groups who can help?

@Whitegrenache

They think it is likely to have been the booster jab (again very rare, please don't let this put anyone off!)
I'm on Fragmin until August due to being pregnant. My very bruised skin is counting down the days, the rest of me is just happy to be alive.

Yeah pregnancy is contraindicated for rivaoxaban and apixaban.

Breathlessness is key symptom and or pain in legs in the case of DVT which can also happen

@Whitegrenache
No worries. I appreciate any replies.
I've had a bit of a look, but except one Reddit group I couldnt find much. Perhaps it was because I was being too specific and searching for people with pulmonary embolisms

thrombosisuk.org/

Try this one?

USA but may have good info?

www.cdc.gov/ncbddd/dvt/links.html

@Elskerdeg

I'm on low dose blood thinners-aspirin. Sorry I can't remember the dosage and they're in the bathroom!

It might be my age? I was 44 having DD. And now I'm 53.

It was more terrifying for my DP at the time. He is a paramedic and it was his colleagues who took me in. They wee all giving each other face signals and looks. I was a bit out of it.

But I'm ok now and have a very healthy 9 year old.

I’ve had them three times and I’m on thinners for life now (Eliquis/Apixaban). It does get easier to cope with, I promise. Follow up care is minimal at best, often non existent. Once you finish your course of thinners, that will pretty much be it. I’m not going to lie, every time I feel a twinge in my leg it crosses my mind, but the fear does fade.

There are support groups on FB but the ones I found were largely American based. There was lots of ‘praise the Lord for healing me’ and ‘10 years ago I stared death in the face’ type of posts which were all a bit melodramatic.

@Elskerdeg I have everything crossed you have a nice chilled out baby when they arrive too!! One of the time I sincerely hope the old wives tales are correct lol!

I’m like you, very lucky with the family and support I have too but as you know yourself with having a baby during all this other stuff, it’s hard when they are wanting you to do this and that but it just takes a while and my dd’s tantrums have been EPIC as of late, goodness knows how your doing it being pregnant and a 2.5 year old I take my hat off to you lol!!

Don’t ever feel silly getting checked especially when pregnant and thank goodness you stuck to your guns and stayed. If anything comes out of this for me that could help you I’ll let you know and keep you updated and hope things get better for you too x

[quote Elskerdeg]@Tinabn
How are you now? I hope the damage wasnt long term.
That is exactly the stage that I am at: I feel like I am hearing more and more of people who die from this. Partly the reason that I created this thread, to counter all those stories![/quote]
I am fine now, it did seem that every infection found it’s way to my lungs for quite a while though. As long as I was on warfarin I felt safe, it was only when I came off it that I was a bit worried. I was angry for a long time because it dawned on me that I had had a very lucky escape, I saw six doctors in six weeks, was told it was pleurisy, had my leg measured, told it was cellulitis, and was gasping for breath, dragging my leg, looking after a five and six year old and teaching full time! When I was finally admitted to hospital I was made very aware that I was a time bomb. Later I was found to have Factor v Leiden, essentially sticky blood, that makes me more prone to clots, but I didn’t require any other medication except for an aspirin when flying until 8 years ago when I had severe migraines and was put on clopidogrel as a safety measure.
Both my DH and my DM have had pulmonary embolisms and they are fit and well, be aware of your body and check any symptom that worries you but the fear goes and you will realise that fatal PEs are very rare.

@Sn0tnose Oh my goodness 3 times?! Are you ok now? Did they happen in quick succession of each other and was it all in the same lung?

I’m so sorry for all the questions just a bit apprehensive as you can tell

[quote Ellabellaboo2020]@Sn0tnose Oh my goodness 3 times?! Are you ok now? Did they happen in quick succession of each other and was it all in the same lung?

I’m so sorry for all the questions just a bit apprehensive as you can tell [/quote]
Are you ok now? I’m okay ish. I’ve got some ongoing lung problems but they’re a bit vague on how much is connected to the PEs. The biggest pain is having to be incredibly careful about medication because there is so, so much that you can’t take with blood thinners. So no Anadin, Ibruprofen, Night Nurse, and that’s just the over the counter stuff. And I have to have blood tests every six months, which I believe are to make sure that the thinners aren’t damaging my liver or kidneys.

Did they happen in quick succession of each other and was it all in the same lung? No, one in my twenties, one in my thirties and one in my forties. I have no idea about the first two because I was just told I had a PE. (My local hospital is not great on the details). I only know the third one because the dr in ambulatory care called me into his office while he had the results of my CT scan up on screen. That was bilateral and all I remember were lots of little dots with a bloody great big one floating about in the middle.

I’m so sorry for all the questions just a bit apprehensive as you can tell Please don’t apologise, I completely understand. It’s bloody scary.

Hi @Elskerdeg sorry to hear your situation.

I hope you’re ok.
I had a DVT/PE 13 years ago. Misdiagnosed a number of times but they got there in the end!

It is really scary. I lived alone and went to hospital a number of times after being discharged because I was terrified.

I had a few DVTs afterwards and am now on anticoagulants for life.

But apart from that I’m fine, no problems for years.

Take care

No reason for mine either. Only thing I did different was have the vaccine.

I had multiple small clots in 2003, no cause found. I was put on warfarin for 6 months then discharged. I've had no problems since, just had to have clexane injections during pregnancy.

Mentally it took a good 18 months for the fear to reduce, but it did with time. It's a huge shock when things like this happen.

@BetsyBigNose
Gosh you've been through it. That must have been so mentally draining and difficult. I can't imagine it's much comfort to you that others recover easier, and the whole thing must feel so unfair. People shouldn't have to beg to be taken seriously . Sorry also to hear of the long term effects.

I've never actually spoken to anyone who had a sudden sense of doom, but I know it's a symptom for a few scary issues and something drs are taught to take very seriously. So I'm glad they at least saw you then.

@Moonflower12
How terrifying for your DP! We had to call an ambulance for my sister last week, she almost died, and honestly could not fault the ambulance staff. They were very chilled out (as in a very calm nature) whilst getting it all done and honestly it calmed me down. Can't imagine how different it was for your then DP.

Glad to hear you are well now

Also only getting to reply now because I get crazy night time anxiety since the diagnosis (the whole am I going to die in my sleep keeps me up). So I had to sleep the second I could!

@Whitegrenache

https://thrombosisuk.org/

Try this one?

Thanks! I'll check it out

I had one 2 weeks after my youngest was born, in 2016. It was terrifying at the time, and I actually didn’t realise for a while but I was having panic attacks which mimicked the symptoms of the embolism for about 6 months afterwards. I was on warfarin for 6 months, with weekly trips to the blood clinic, so had a very disrupted mat leave, but since then - touch wood - I have been absolutely fine. No ongoing issues, no ongoing medication. I had a couple of scans and a consultation with the haematologist before I was discharge, including an MRI of my heart. Those might be worth asking your GP about - haematology was to check there wasn’t an underlying condition, and the MRI to check my heart hadn’t been damaged by the clot passing through into my lungs.

Pregnancy and childbirth are both risk factors for clotting as your blood is stickier, so there’s a good chance that it won’t be an ongoing issue for you after the delivery.

But I do remember my anxiety at that time was through the roof, so sending lots of good thoughts. I wouldn’t have believed it at the time but I hardly think about it now.

Oh this might sound crazy but for the middle of the night mind racing, I would put on a YouTube meditation video and do square breathing to calm down. Just thought I’d mention it as you said you were finding it hard to sleep.

@Sn0tnose
It really does help to hear of people that have been through the same thing with the same worries so thanks for replying. And I guess kind of reassuring that everyone gets the same lack of follow up care?

I'm not on Facebook and weirdly enough you haven't sold me with those groups .

I'm trying to read and reply to everyone but can I just say how lovely you all are for taking the time to reply to this thread. (Why isn't there a heart emoji?!)
I've felt really alone in this experience since I got diagnosed and you are all making this so much less scary.

@Ellabellaboo2020
Honestly it is stupid how easy my 2.5 year old is. I've been incredibly lucky. He brings me my sick bucket if I feel I can't run in time, and if I need to lay down he will happily play by himself. We've had a rough month will other family news and honestly he's been a shining light to get is through it.

I found 18 months much harder. When the tantrums began I felt so unequipped to deal with them, and they just feel things so strongly! Plus mine wasn't even sleeping well at night at that point, whereas this morning he's the last one to wake up.

Fingers crossed for you and the scan results.

@tinabn
It's crazy how many of the people responding had to fight to get taken seriously. I am feeling very lucky right now.
I honestly don't know how you managed to do all of that. I'm off work with the PE at the moment just looking after my toddler and it's tiring enough. You sound really strong.
I've heard of factor V Leiden. I guess it's useful to know you have it at least. Did you have to ask to be tested?

Man that is a lot for your family to go through. So good that they are well now though, these recovery stories are lovely to hear. And thanks for the reminder of how rare a fatal PE might be.