Anyone else had a pulmonary embolism? Hand hold needed.

[Allofaflutter]

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.

I did years ago dec 2006

Started with dvt in leg /swollen /aching

Over Xmas found breathing hard esp lying down

27 dec went to doc and rushed to hospital as clot had moved up leg to lung and collapsed it

2w in hospital

But honestly fine after that 🙂

Was on warphin for think a year. Daily jabs

Needed every 2w blood tests to check levels

Eating green brocolli made it shoot high

They didn't know why happened. Blamed pill in the end

As I didn't smoke. Exercised weekly x3 at gym and a lot thinner lol

But when was preg in 2016 so 10yrs later due to previous pe I was doing daily jabs of heparin to
Protect me from 6w preg and for think 6w after

You will be fine 😘

Same. Was told that if hasn't gone in I would have been dead by new year as wouid have gone to my brain

So from leg to chest/lung to brain in 2/3w

Hmmm it’s so hard. I’d say if it gets worse than at the point they discharged you for sure. But also don’t worry about wasting their time, if you’re worried then go back. I bought one of those finger clip sats monitors for dd which we found reassuring. They do pulse and oxygen levels. Saying that dd never had abnormal obs even when in a&e but at least I guess we knew she wasn’t getting worse

I have a finger 02/thingy . That’s what made me ring 111.;was in 80% when I moved. Hr was 150+

I think using that might help me work out if I need a&e

I’m just so scared i still might die.

It’s really hit me emotionally.

And I’m trying not to show how scared I am to my dh or kids. I’m trying to downplay it for them.

I've just posted in General Health about the same. I can't really reassure you OP though as I am panicking about it myself. I am scared to leave the house today and can't tell if I'm giving myself a panic attack or if I have a clot on the brain. I feel like I've just been abandoned.

That’s how I feel, abandoned. I was dying Sunday, but now I’m on my own?

Have to say the aftercare was horrendous. We were told dd had a clot, given a prescription for tablets, given a leaflet. Told to come back in a few days for a heart scan, even that was a quick in and out- told heart was ok but no further info. Saw a haematology doctor a few months later to be told no clotting conditions and discharged from haematology

Dd was out of the hospital 5 mins after being told she definitely had clots 🤷🏻‍♀️

We should have married a royal. Only way to get decent aftercare obviously 🙄.

The first few weeks in the morning I used to put my ear to her bedroom door to see if I could hear her breathing still 😥

Yes. I had double massive pulmonary emboli in July 2022 following a spinal fracture and a week's complete immobility. I was still in hospital and it was only found when I became breathless and had dangerously low blood saturation. When they came in with an enormous shot of Fragmin, I knew what they suspected and was terrified.

It's so scary, and the group of ward doctors doing the rounds kept impressing on me how serious this was. I knew! I spent that night in mortal terror, consoled by a lovely nurse, and the next two days in high obs on oxygen. I was also extremely fortunate it was found when it was; had my standard obs been done a few hours later it might well have been too late. They also later found a DVT in my left leg.

I was on Apixaban for 6 months. Under the advice of consultant haematologists that was stopped because the clots were clearly provoked and hadn't happened unprompted. I am, however, told that if it happens again for any reason I'll be back on anticoagulation for life. I do think I get breathless more easily than I did previously. Long haul flights terrify me: I wear compression socks and and I'm constantly quaffing water and getting up and walking about. I don't sleep.

Get up and walk about as much as you can. That's crucial.

They've caught you in time. You and I have both been lucky 🌺

OP I am so sorry you are going through this. A PE is a really terrifying experience. It does sound as if you have had the correct treatment and remember this is absolutely routine for the staff so they may have forgotten what a scary thing it is for you.
As pp said, the tablets don't dissolve the clot, they just stop it getting bigger and stop new clots forming while your body breaks down the existing clot. This usually takes between 3 and 6 months.
Normally they they investigate whether there are immediately urgent causes, including cancer, and try to establish what may have led to this clot, in case there is anything else that needs treating urgently. Usually, before stopping the treatment, a follow up with the haematologist will be arranged and everything will be reviewed again, including family history, which can be very important.
What is the name of the tablets?
Try to keep well hydrated and mobile.

I’m sorry you’re going through this as well. Can you physically go to the GP and talk to the receptionist about how to get an appointment?

My tablets are xarelto /rivaroxaban

I have arranged counselling in the past for people after PE when it has been very traumatic. It is understandable to be shocked.

15mg twice a day for 3 weeks then 20mg a day

You must take them exactly on time and with food. Hopefully they told you that.

I’ve got a phone appointment for the V/t clinic for Valentine’s Day. Not sure what the v/t stands for.

They did. They said pick a time and stick to it so I’m doing 9am /9pm.

Having toast before both times

Venous thrombo-embolism or venous thrombosis.