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.

It’s made harder by my being an amputee (hand) from childhoood menegitis.

thanks everyone, I’m now off to bed finally!

Hi OP,

I had one in February last year so nearly a year on now. It was after the birth of my second baby - woke up out of nowhere with the most horrific pain I’d ever felt (that’s after 2 natural births with no pain relief!) couldn’t hold my baby and couldn’t take anything other than a shallow breath, couldn’t move either without feeling as if someone had stabbed me.
They consider it was caused by being pregnant and that I hopefully won’t have one again but they don’t know and I have to take precautions now like not being able to go on the standard pill and have to wear flight socks long haul.
Mine is classed as the version where there’s a reason for it as opposed to it being a random one. It was actually Mumsnet who urged me to go to A&E as I thought I might have just pulled my shoulder and 111 just told me to go to a pharmacy despite hitting many warning signs for it, so I totally get the worry about it happening again out of nowhere.
I was given the stomach injection at the time and then put on blood thinners for 6 months afterwards and then I didn’t have any follow up, just that I’d know the signs now.

So far I’ve been okay but I still have those terrifying moments where I might get a shoulder pain and I spiral into panic that I might die and leave my children. I think coming so close to death leaves you with a lot of what ifs and difficulties coming to terms with what could have happened.
Wishing you all the best on your road to recovery ❤️‍🩹

Thanks. I think I got my virus from work. I ironically work at a gp surgery and worked between Xmas and new years. Lots and lots of poorly people this year, flu, covid and this virus that isn’t Covid (I’m negative). Been worse this year. I’ll be grilling the gps when I go back.

@Allofaflutter fellow double PE survivor here :) I was 23, fit as a fiddle and out running when I had a heart attack and they discovered multiple blood clots in my lungs . They found I had a hole in my heart (PFO - 1 in 4 have this without knowing!) and the blood clots travelled up to my heart also and blocked my artery, causing a heart attack. I have no family history of blood clots and no health factors. The cardiologist/ haematology team were strangely excited by my rare case! They advised lifelong blood thinners which I was more than happy to take given the risks and how dangerous/ deadly clots can be.

I’m 29 now - my mental health took a beating afterwards and I lived in fear for a very long time. Multiple hospital trips each time I felt a pain etc. I’ve had a lot of therapy since and finally accepted that it was a rare/freakish accident and I was extremely unlucky. Thank god I went to the hospital is all I can say.

Be kind to yourself - ask the haematology to discuss your treatment plan at length and for all your bloods to be checked for clotting groups etc. anything to put your mind at rest. Pleased to say I’m back running again! And I’ve just had a little boy - they were able to adapt my medication for the pregnancy and delivery. Feel free to ask any questions 😊

I had a large PE in September 2022 and still on blood thinners.I was alone in the house when it happened out o the blue.I am a retired nurse so I knew what it was, sudden pain in my right side o chest radiating to the back.I have COPD and have an alert on my smart watch or when my heart rate rises or alls too much.It certainly alerted me, heart rate up to 130per minute and struggling to breathe.I put my oxygen blood monitor on my finger and it was 70per cent
I rang for a taxi as I knew that ambulance would be too late.
The nurse in And E thought I was having a flare up of COPD and gave me a nebuliser.This helped a bit but while I was in waiting room waiting or doctor I got another right sided chest pain, security man got the nurse to come, nurse said I was panicking, but I insisted on seeing a doctor.I was allowed back in, saw doctor who sent me for a scan, then I was put into bed area.Another episode of pain so I signalled for help that's when doctor told me I had a large clot in my right lung which was travelling across my chest to the left one.I burst into tears and said leave me alone for a bit.A nurse gave me an injection of anti-coagulant and I phoned my son who came in.
I was in hospital for 4 days before going home.It is very scary.Pulmonary Embolus is one of the largest causes of sudden death.One of my sisters had died of it a few years ago, and also my son's ex mother-in-law.
I know how you must be feeling OP
24 hours before the PE I had a covid vaccine, I have refused them ever since.

In 1988 my grandma dropped dead from a PE, on her way back from the bathroom.
These days they are much more aware of things like that.
I have been very lucky that both my dvt's were caught when they were in my groin. Both times I was put on injectable blood thinners, then went on to warfarin. I am supposed to still be on warfarin due to family history and the fact that I've had 2 within 20 years of each other. Unfortunately my mental health has got in the way.
I am aware of the symptoms and am also aware that being more active helps.

Not had a PE, but had a heart attack due to an arterial blockage last year, at 35 years old. I had been ill with virus after virus following a nasty bout of Covid, but was dismissed as long Covid/asthma. It was a massive shock, it's absolutely normal to be emotional following a critical illness. For me the tears turned to anger quite quickly, and it all felt very surreal for a long time. Almost a year later life is pretty much back to normal thankfully, bar a mountain of medication, but I do worry about it occurring again. I get the "no symptoms" thing as well, it's so hard to judge what is normal illness and what's not, and I had none of the classical heart attack symptoms either. Like you, rang 111 and was rather shocked when they sent me an ambulance on blue lights! Be kind to yourself, wishing you a speedy recovery

My mum had one during pregnancy with my sister.
Strangely I was thinking about it, very randomly before coming across this thread!
Luckily she and my sister were absolutely fine.

This was nearly 40 years ago.

Sending you lots of love, you're in the right place.

I've had a provoked PE recently.

It's not pleasant but you're in the right place and they are treating it so just focus on getting well for now.

I’m feeling tired today but not having any real problems breathing. Only out of breath when walking. My work called and although I’m not registered at my work, one of my bosses called to check on me which was nice. I’m a care pathway coordinator and work in an office with 7 others. 3 of us are sick!

My 21yo dd had multiple PEs in both lungs just over a year ago. No risk factors at all, not even on the pill and very slim. They’ve never found a reason. It is scary. But she’ll be on blood thinners for life now so hopefully the risk is small. Just a pain for things like travel insurance goes up. There’s also a slight risk to being on thinners. Ask to go on apixiban it’s meant to be the safest. Dd is trying to get changed onto it. I keep telling myself now she’s on blood thinners she’s safer than people walking around with no idea they’re at risk and not on thinners

Interesting what @nildesparandum said about the covid vaccine. Dd had had the vaccine a few weeks prior to her pe but also had actual covid a while before that. Covid itself raises the risk of a clot for up to six months after the illness and yes there’s a clot risk with the vaccine. Dd blames the vaccine.

I had the vaccine in September as I work for nhs.

I had a PE and massive DVT in my leg at 18 completely out of the blue. It was a terrifying experience at a very vulnerable age.
Somehow I got through it though, and was diagnosed with a blood disorder as a result. I had blood thinners for 6 months then got left to get on with my life, basically. In my mind 20s I suffered another DVT (a small one) so got put on blood thinners for life.

To be honest I feel safe now I'm on the meds. I'm now 34 and living my best life.

These things can really throw you, especially when they're life threatening. Lots of people with serious health conditions or having gone through something like that will tell you to live life to the full. You never know what's round the corner, and you may never ever have anything like it again. You just don't know.

Just seen this, I’m sorry that must be scary. The good thing is they know, they can monitor, meds if necessary. Maybe some damage will recover?

I think this a bit as well, although Dd is terrified of coming off them so is happier on them. Whether that will change in time I don’t know. So they tested her for the five most common clotting disorders and she was negative for all, but the dr said there’s about 50 plus more clotting disorders and we’re not testing you for all of them and I think possibly other ones they can’t test for.

So their thought is that Dd might have a clotting disorder they don’t know about so she needs to stay on thinners. 🤷‍♀️. Whereas my thought is well what if it was Covid or the vaccine which caused it then she doesn’t need to be on thinners? But they just don’t know the cause. I worry if she has a car accident and she’s on blood thinners, or falls over and hits her head.

I had to go back in yesterday as I couldn’t breathe again. Had more tests. Another X-ray but thankfully it’s not got worse. I hadn’t realised the treatment hadn’t broken them up yet. I thought it would have before they sent me home but no the clots are still there. I’m not sure I understand this very well.

Thank you all for all your kind words.

Mentally I’m all over the place x

Yes, this was hard for me to get my head round. The medicine doesn't actually break the clots up, it should stop the current clots getting bigger. Your body will naturally break the clots down over time but this can take weeks/months depending on the size of the clot. I guess be reassured that they are happy your current clot size is safe and it should not get bigger but expect symptoms for some time. Saying that if worried you go back to a&e. I would take dd back at every acute chest pain attack - she is literally on first name terms with the staff now.

I had several a couple of years ago. They were Covid related. I’d gone to A&E with chest pain and I said I thought it might be a PE as I had pain in my leg and thought I’d had a DVT that had dislodged. They did a full examination and there was no evidence of DVT and they said PE highly unlikely. Then the d-dimer result came back and it was through the roof. A scan then showed several PEs on both lungs. The consultant said the only reason I felt pain was because one of the PEs was next to the heart and had inflamed the pericardium. I was clot busted in hospital and then sent home with Apixaban for 6 months. The consultant wanted a prophylactic dose for life but I refused as I engage in activities that often result in me grazing/cutting myself.

im now confused on when to go back. My discharge letter said go back if you have SOB, chest pain or leg pain. So as I had all of those I went back and the dr said to me well of course you will have all of those you have two massive clots still. So how do I know when I should really go back?

My left leg is swollen too at the (c)ankle and the dr said maybe that’s where the clots started. It’s noticeably bigger than the right still. I feel very unsure on what is serious and what is to be expected.