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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Anyone else had a pulmonary embolism? Hand hold needed.

249 replies

Allofaflutter · 30/01/2024 10:06

Currently in hospital after a double PE. I’m worried so much it will happen again. Drs aren’t telling me much and I’m terrified it will happen again. Anyone completely recovered and never had one again? They kept saying how rare double PE was and how serious it is. I was hours from death they said. I’m just scared I’m not going to recover again. They have stopped my hrt and I’m been ill with this awful virus thing since NYE and they are saying it could be one or the other of both as reasons or just random.

OP posts:
Original poster
Allofaflutter · 01/02/2024 19:14

This has set my anxiety off. I can’t keep going to an and e over everything. Is this something or nothing?

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Original poster
Allofaflutter · 01/02/2024 19:19

I’m so scared

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Original poster
Allofaflutter · 01/02/2024 19:48

Anyone?

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Feralgremlin · 01/02/2024 20:07

Hi OP,

So sorry to hear what you are going through, sending you love.

I had a bilateral PE back in 2013, I was only 20. Was hospitalised for 2 weeks, it really was an unpleasant experience. Mine was caused by a genetic clotting disorder. I’m now on anticoagulants for life, it was originally warfarin but now one of the newer ones which doesn’t need blood tests all the time! Also, my heart had some damage, cardiologist said it was “square shaped” but apparently that isn’t abnormal after PEs and resolved itself over time.

Not going to lie, I still do sometimes panic if I get a twinge in my ribs and think it’s happening again but so far it’s all been okay.

wishing you a speedy recovery!

Original poster
Allofaflutter · 01/02/2024 20:42

Thanks. 111 is ringing me back.

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Caswallonthefox · 01/02/2024 20:57

I had my last dvt, in my leg, in 2016. To this day I still have one leg fatter than the other.

Original poster
Allofaflutter · 01/02/2024 21:49

I took my blood thinner at the right time and it’s stopped being red and hot.

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Original poster
Allofaflutter · 01/02/2024 21:50

My left is definitely bigger still.

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Original poster
Allofaflutter · 01/02/2024 21:50

I’m just going to have to learn to stop being so scared.

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Original poster
Allofaflutter · 02/02/2024 09:20

It’s back this morning.

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Original poster
Allofaflutter · 02/02/2024 09:21

Going to drs . I’m fed up with being terrified all the time.

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CormorantStrikesBack · 02/02/2024 09:21

Allofaflutter · 02/02/2024 09:20

It’s back this morning.

The chest pain? Honestly go back to a&e if you’re worried. Go now before it gets too busy hopefully

Original poster
Allofaflutter · 02/02/2024 09:22

No the lump on my leg. Hot red lump

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Original poster
Allofaflutter · 02/02/2024 09:22

Sore too

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Original poster
Allofaflutter · 02/02/2024 09:23

Got drs appointment at 11. I’m trying not to keep going back to a/e. Don’t want to waste the precious resources.

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CormorantStrikesBack · 02/02/2024 09:25

Did they scan your leg previous? I’d be tempted to go to the hospital because the gp can’t scan it. Though I suppose the hospital may say no point scanning because you’re on the treatment. So even if it is a clot they won’t change anything? I don’t know, maybe they’d want to see how big it is?

Original poster
Allofaflutter · 02/02/2024 09:26

I’m sitting here reading my notes they sent my gp from hospital and my d diner was 7250. Is that bad?

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CormorantStrikesBack · 02/02/2024 09:26

Allofaflutter · 02/02/2024 09:23

Got drs appointment at 11. I’m trying not to keep going back to a/e. Don’t want to waste the precious resources.

You wouldn’t be wasting resources. Honestly don’t worry about that. But glad you have an appointment. See what they say first.

Original poster
Allofaflutter · 02/02/2024 09:26

i had ct scan with contrast on chest, 2 chest X-rays. Nothing else but bloods

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CormorantStrikesBack · 02/02/2024 09:32

I think anything above 5000 is considered extremely elevated but no idea how it relates to size of clots, etc.

Original poster
Allofaflutter · 02/02/2024 09:36

I suppose it would be.
it says
extensive bilateral pulmonary embolism so I guess it’s to be expected.

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CormorantStrikesBack · 02/02/2024 10:02

🤞🏻your gp can reassure you and explain things a bit better

Eccle80 · 02/02/2024 12:06

I hope you have had some reassurance from the GP.
My Mum had multiple pulmonary embolisms around 10 years ago - lots of huge clots and they said she could have died if she hadn’t gone in when she did. She was in hospital for a while and they did a lot of investigations (I think part of the reason she stayed in was at one point it looked like it could have been cancer), but they never found a cause. She was on warfarin for a long time but now has a different blood thinner that doesn’t require all the monitoring and adjustment. She does have permanently low oxygen sats and tends to get out of breath easily, but she was quite a bit older than you at the time of her PE and has a number of health conditions too. I sympathise with your worries, I know she has always been anxious about it happening again, especially as she doesn’t know why it happened. I hope things improve for you quickly.

Catza · 02/02/2024 12:10

My partner had it quite a few years back. He is absolutely fine. We had a bit of a scare when he broke his leg last year due to complications after wearing a cast (found a clot in his leg) but a few months of warfarin resolved it and he's been off medication again for a good while.

Original poster
Allofaflutter · 02/02/2024 14:49

Thanks. Gp wasn’t happy with leg and thinks it’s a blood clot with cellulitis so now on antibiotics too!

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