Pulmonary embolism

Elskerdeg · 2022-01-13T22:09:12+00:00

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.

AramintaLee · 13/01/2022 22:10

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

Hope you're okay

murasaki · 13/01/2022 22:11

Yes, summer of 2020, 3 in my leg as well. Am on blood thinners now (RIVAROXABAN) and doing OK, how are you doing? I was terrified when in hospital, but have kind of settled it in my head now.

RevolvingPivot · 13/01/2022 22:12

Had large ones in my lungs last summer. Had one scan since in December. Not had the results yet.

Original poster

Elskerdeg · 13/01/2022 22:28

Thank you for responding and also for asking if I am okay.
I.. don't know. It's been a month since I got diagnosed (bilateral and lots of them, moderate sized). The anxiety is really getting to me as well as the worry of death. I'm on twice daily blood thinners for a long time now at least until I give birth in the summer.
It's just a really scary time and it's hard to find other people that have gone through the same thing. Did you find the anxiety/fear of death went away quite quickly? What about the shortness of breath?

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RevolvingPivot · 13/01/2022 22:29

I'm still out of breath 7 months later. My appointment after being discharged was November on the PHONE so I asked for a scan.

Original poster

Elskerdeg · 13/01/2022 22:33

@RevolvingPivot

I'm still out of breath 7 months later. My appointment after being discharged was November on the PHONE so I asked for a scan.

Wow so they hadn't even seen you in person? It feels a lot like just being left to it doesn't it? Like take these drugs and try your best to survive. I wonder why the scan results are taking so long, can't be helping how you feel. What type of scan did you have?

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Moonflower12 · 13/01/2022 22:34

I had one 4 weeks after my DD in 2012. I was so frightened. I was blue lighted to hospital.

I still find I can a bit breathless even now so I don't know if there was some damage?

The fear does go away eventually. I am on blood thinners still.

RevolvingPivot · 13/01/2022 22:39

@Elskerdeg Nuclear Medicine. I've tried phoning the hospital keep getting passed around. I didn't worry about dying because the blood thinners stop it happening I think?

Original poster

Elskerdeg · 13/01/2022 22:39

@Moonflower12

I had one 4 weeks after my DD in 2012. I was so frightened. I was blue lighted to hospital.

I still find I can a bit breathless even now so I don't know if there was some damage?

The fear does go away eventually. I am on blood thinners still.

That sounds terrifying. Especially so soon after having a baby. My son is a toddler and having him has definitely made me a lot more scared of the possible outcomes.

Did they do any follow up scans?

That's good, I hope mine will too. Oh, I thought they only kept you on blood thinners if it happened a few times?

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Ellabellaboo2020 · 13/01/2022 22:43

I have one just now OP in my left lung was diagnosed in between Xmas and new year. It’s horrible tbh and I don’t feel like it’s getting better in fact I feel like I have pain in my right lung as well now….been for another chest X-ray and there is “ fluid “ in my right lung too. Got another CT scan next week. I’m relatively young ( early 30’s ) was running 25k a week before this happened and I’m terrified tbh. Like you I’m on blood thinners ( Eliquis ) for the next 6 months at least. They are a bit stumped as to where it’s came from as no signs of DVT, don’t smoke etc. but I’m wondering if I’m making things worse by overthinking things all the time?? Fingers crossed all will be fine in the end sending hugs 🤗

Original poster

Elskerdeg · 13/01/2022 22:44

@RevolvingPivot Would that be the VQ scan? I tried to have that done and vomitted. To be fair, I did warn them I was suffering a lot with pregnancy sickness! My understanding from mine was that the results were immediately seen, surely it doesn't take a month to give you a call?
I think the thinners make it a lot safer but not necessarily prevent death. I am the most anxious person anyway and now every twitch or pain sets me off big time.

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Original poster

Elskerdeg · 13/01/2022 22:51

@Ellabellaboo2020
Wow that's more recent than mine.
I'm the same age as you, though definitely not the same fitness level!

Pleased you are getting another scan, that's got to help with any anxiety. Did they mention what could cause the fluid?
I don't know about you but I feel like it hit me out of the blue. The drs that diagnosed me really didn't think it was going to be one, and then they were surprised when it was as my only risk factor is slightly overweight and pregnant (but I've been told since then that first trimester pregnancy doesn't increase the risk by much at all). I saw a blood specialist at the hospital this week and she thinks due to the timing I might have had a very rare reaction to the COVID booster (don't want this to be any anti jab messaging, still reckon it was worth getting). Have they referred you to a specialist? I only found out about my appointment a few days before it. Before that I felt abandoned really by the drs.
It's really tough hope you are okay

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Rosebel · 13/01/2022 22:53

I had clots on my lungs in 2020 after my son was born. A year later they discharged me over the phone. A week later I was rushed back to hospital as I still had the clots.
I was told they don't scan you before they discharge you anyway.
I'm still on thinners now and still get breathless. I did recently have a blood test which says I have a low risk of having any clots left but I feel safer taking the thinners.

BotterMon · 13/01/2022 22:55

Yep large bilaterals 5.5 years ago. No cause found. On daily Rivaroxaban since.

Breathing hasn't fully recovered. Normal life has continued, including high risk sports.

Just have annual meds review and blood tests. After diagnosis, never had another xray or MRI just bloods.

I was scared for about a year afterwards but don't think about it now.

Original poster

Elskerdeg · 13/01/2022 22:57

@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

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Tinabn · 13/01/2022 22:57

I had one in 2001 along with DVT in one leg, despite being the most painful thing I have ever experienced it was undiagnosed for 6 weeks and so did a bit of damage. I was off work for six months and it took a couple of years to get over it, I would get stuck if I was sleeping on my front sometimes and had to wear a support stocking for a few years to stop my leg from aching (it’s still bigger than the other one).I was on warfarin for about three years but then I was able to forget about it.
The follow up care was as dreadful then - basically get on with it- as it seems to be now and you will start to be aware of all the people who die from PEs, but you will be fine, but be prepared to be anxious when you come off the blood thinners.

Original poster

Elskerdeg · 13/01/2022 22:59

@BotterMon
Thanks for replying it's lovely to hear about someone on the other side of this who is still able to do things like that.
Hoping my fear goes away too.

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Ellabellaboo2020 · 13/01/2022 23:01

@Elskerdeg I really hope your ok too especially with a wee one on the way! I have an 18mo dd too and it’s scary and you hit the nail on the head it came completely out of the blue was sitting watching TV one night and got this pain out of nowhere.

Your story is pretty much identical to mine apart from the pregnancy bit….they did not expect it in the slightest and were really shocked and have said the same to me about the covid jabs too but I didn’t want to put it in my first post as I didn’t want to scare anyone.

I do feel a bit let down tbh I had to really push to get them to listen to me in the first place that something was wrong just kept getting told it was a pulled muscle for 3 weeks before I went to A&E not being able to breathe and begging them to check me over.

Been referred to a specialist now but they have put the appointment on hold for 2 weeks to see what comes of the scan on Monday.

I actually feel a little better, not that you are in this position in the slightest, but it’s nice to see I’m not alone

Original poster

Elskerdeg · 13/01/2022 23:02

@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!

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Whitegrenache · 13/01/2022 23:04

You will need at least 3-6 months of anticoagulant-
Rivaroxaban or apixaban

There is the possibility of long term ant coagulation but risks of bleeding need to be taken into consideration.

Whitegrenache · 13/01/2022 23:05

Sorry - some doctors may offer you life long anti coagulation lower
Dose to prevent another event but that is a very individual treatment plan depending on what provoked your DVT/PE?

Whitegrenache · 13/01/2022 23:06

Side effects of anti coagulation are bleeding - but in a young patient this is usually very low and the benefits outweigh the risks

Whitegrenache · 13/01/2022 23:07

Did they say what caused it in your case?

BetsyBigNose · 13/01/2022 23:07

I had 3 months of severe breathlessness, got to the stage I could only walk up 3 stairs at a time before needing to sit down and rest. I visited my GP 9 times in that period and she kept sending me away saying I was "overdoing it and needed to rest". I had to sleep sitting up as I couldn't breathe laying flat. I was 32 and convinced my children would wake up and find me dead one day.

One morning I had this feeling of impending doom, that I just couldn't shake, so took myself off to A&E. I was in the CT scanner within 15 minutes of arriving and when I asked the radiographer if I had a blood clot, he said "A blood clot? You're riddled with them - we stopped counting when we got to 30!"

I had a week in hospital on blood thinners and took RIvaoxiban for 6 months. When I stopped, the PEs recurred within a week so I went onto Warfarin. After 6 months they stopped that and the PEs recurred again after a week! I'm now on lifelong Apixaban.

Unfortunately for me, as the original PEs took so long to be diagnosed, I had a lot of lung death, so now have a hugely reduced lung capacity and get breathless even when just talking. It's so bad that I'm now registered disabled and on PIP, unable to work.

Most people seem to recover pretty well with not too many long lasting ill effects, I have been incredibly unlucky - and had a particularly incompetent GP!

Original poster

Elskerdeg · 13/01/2022 23:09

@Ellabellaboo2020
It has made this pregnancy a lot scarier than the last one for sure! Just hoping the old wives tale of bad pregnancy, chilled baby is true

I imagine it's even harder with an 18 month old. My son is 2.5 so he can understand a bit more of what is going on in terms of me not being able to play in quite the same way as before. Do you have much family support? I'm really lucky in that regard, can't imagine how much more difficult this would have been without.

That sounds horrible how much you had to fight to get checked. Well done for being persistent! I got sent by my GP (she said it was probably just a waste of time but due to pregnancy had to check) and I very nearly walked out because I felt silly being in a room of really ill people when I was just a bit short of breath. (Thankfully I didn't!)

Hopefully the two weeks go by quickly!

I know exactly what you mean. It's a weird comfort isn't it

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