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.

My first has just turned three too. It's the best age, not sure what to do with a newborn anymore 😆. Think its took that long to forget about how much I hated pregnancy and labour before I did it again.

Hi all, looking for some help. I’ve had on and off chest pain, shortness of breath and pain in arms and legs. Doctor has told me to go to a&e for suspected pulmonary embolism however struggling to get there. Just wondering what everyone’s experiences are? As my pain is on and off. It’s in the middle of chest. Abouve breast and under rib cage

Are you in the UK Kozzy? Because if you really can't get there I'd ring an ambulance. It was scary in hindsight how life threatening mine was. I only had shortness of breath on excursion. And by the time I went to hospital I was getting a dull pain when I breathed in where you describe. My blood tests showed my heart was releasing the same cardiac enzyme it does when you're having a heart attack because it was under so much strain presumably.

I had one when I was 18. I also had a massive DVT in my leg and couldn't walk properly for weeks.
Was on warfarin around 6 months.
Had another DVT in same leg in my mid 20s.
On blood thinners for life now. They thought I had some kind of blood disorder, but were a bit vague.

Don't think about it much now to be honest. Just getting on with my life.

I do have a bit of health anxiety if I get pain in my chest or in that leg, but only a bit.

Are you able to get some compensation?

Have you called an ambulance?

Thrombosis UK are very good. Have you contacted them at all?

I am in a&e now 🤞🏼

Great! You're in the right place 😊

Hi @Kozzy1 how did it go in a and e?

My son has had two episodes of pulmonary embolisms, four years apart, he is now on warfarin as rivaroxiban had no effect. He has just been diagnosed with CETPH and we are awaiting an appointment at the Papworth to decide whether he needs surgery. he is only 28 and autistic which adds to the complications! Scary times!

Just noticed, I posted in May!

@spanieleyes
That sounds really scary for your family! He is so young as well. Fingers crossed for the best outcome.

Both my parents worked in the NHS for their whole careers, my DH works for the NHS these days and they helped me to safely deliver both of our DDs. Despite the long lasting affect on my health (there have been knock-on issues too, such as stomach ulceration caused by painkillers prescribed for the PE pain which won't heal due to the life-long blood thinners, so I'm always anaemic and prone to passing out without warning!), this was really just one lone GP who failed me. I visited her after I had been diagnosed, and she did apologise and promised she would learn from it. Although it's shitty that I can't work, I am grateful that I get PIP and UC, but it does mean we've had to sell our home as we couldn't afford to keep it, but I think the NHS has done - and continues to do - so much good for me, that it just wouldn't feel right to sue them.

they took bloods and ecg. Told me bloods were fine so I took myself home. Had a full blown panick attack in there as the pain was so full on but they didn’t do a lot to help. Pain has died now for now anyways. Just a dull squeezing on the chest rather than stabbing sharp pains

Died down *

I was diagnosed with PE around a month after having my son. Was fit and healthy and in my 20s. I didn't even realise there was anything wrong. I went in with mastitis and the GP was concerned about how fast I was breathing so sent me for a scan. I had some stabbing pains in my lungs and was very out of breath just walking from the car but I thought it was just the infection! Turns out I had multiple bilateral PE. I had 6 months on warfarin before getting discharged.

I've managed to recover fine and got back to all my activities no problem so hopefully it'll be the same for you! It can vary wildly in severity so I guess I had a mild case. It is scary though, I agree.

I hope you're feeling better soon!

Did they at least suggest what it could have been? Good that your bloods came back okay.

@GreenWillowAndCatkins
Same here for the prolonged breathlessness. Sounds like you had a really scary experience, and I agree it's definitely always in the back of my mind.

I’ve had multiple clot incidents starting 20 years ago and am now on anticoagulants for life. I was on a low dose as a preventative trial and got another clot. I’ve had lots and lots of tests for various disorders - all negative - including a genetic screen. I have had some triggering factors, but incredibly minor each time, but once you have one clot you are more likely to have others so I’m now in that cycle. Reality is and as told to me by the haemo consultant, they don’t know all the genetic components that cause clotting.

The health anxiety is quite common and I can relate. 20 years ago I suffered PTSD and used to have panic attacks. I’m over that now but also always vigilant to symptoms. Try looking at Stop The Clot website.

anticoags can also cause heavy periods, just be aware. Mirena sorted that for me as can’t take anything hormonal.

To me it's not about revenge or loyalty to the NHS it's about getting money that will help you cope with these health issues and inability to work for the rest of your life. Who knows whether one day you need to go private for something? You'd be able to if you had some money. I'd at least speak to a lawyer. Sorry this has happened to you.

Hi hope its okay to reasurrect the thread.

I've been breathless and reduced mobility for a while (finally got a Dr app a few weeks ago, then first blood tests, then second blood tests yesterday... so ages)

Dr rang yesterday after my test to sat I had blood clots and likely pulmanory embolism - and can I get someone to get medication ASAP (Rivoxaban) I'm booked to go into hospital Tuesday with a phone call Monday to confirm.

Now I've googled - I dont understand why I'm not in hospital now! She told me I'd be okay just not anything strenuous and ring 999 if anything got worse.

I'm really scared that I've had clot(s) a while.

I'm really scared of the V/q scan. I'm hospital phobic at best of times.

I'm v overweight and have me/cfs. I've regularly told people I'm scared about inactivity but I don't think people belive me about how the fatigue affects me. I assume this is why I have it - but I can't start exercising ....

@ALongHardWinter Well done on your weight less. I've long been anxious about my weight and now it looks like it's tried to kill me. Can you please let me know how you've been losing weight?

I'm a bit worried about lack of support people have had. I'm terrified and so so tired. And no idea what's breathless/tired from this and what's me/cfs. I'm struggling to go up and down my house and worried about walking a short distance at the moment.

My babies are older so it's not pregnancy related.

If you are really worried about not being in hospital you can always go to A&E and explain you have blood clots. I think you will get scanned there and then.
I went back in hospital last month as after being fine for months I woke up barely able to breathe. I was taken to hospital and they scanned me the same day.
Unfortunately I have new clots on my lungs but as I was discharged the same day. You might be in a bit longer as they'll have to work out a care plan for you but if you feel safer getting seen I would go tonight or early tomorrow morning.

The doctor's booked me to go in Tuesday (why not Monday?!) So I wonder if they want to see if the drugs have done anything. Or they're short staffed!? (The hospital is soooo busy.) Or its a weekend? Or maybe they're not worried I'm a risk?! It's hard after googling how scary it all is.

I dont have any symptoms when I'm sat watching TV. Just breathless and exhausted when I get up. But the fatigue was normal for me anyway.

I can see online results it was the DDimmer blood test that shows clots, but I've got high white blood cells/platelets/fibrogen too.

My dr did say they'd look for the hospitsl results Tuesday and she seems on it. (It's been so hard getting appointments with her to get to this point though!)

I dont know what to expect from the test or if I'll stay in. And so worried about long term when I'm not v mobile.

Roseberry- sorry you have new clots on your lungs - is that even when on the drugs!? How did you know they'd come back? What will you do?!