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 wasn't on blood thinners for life but I was told that if I ever needed surgery in future I must insist on being given blood thinners starting the night before surgery and continuing for a couple of weeks afterwards to protect me, so do have that conversation with them. I was 37 at the time.

The lack of symptoms scares me.

Yes. No symptoms until the pain. It was not taken seriously by hospital unfortunately.
luckily i knew something was wrong.
i was monitored for years on meds and they think it’s unlikely it will happen again.
ill need meds if i fly or get pregnant.

I did worry for about year after, especially as the pain persisted, however the anxiety does go.

All I knew was I just couldn't seem to get a full lung full of air when I breathed in, but then i started vomiting blood so it was obvious something had gone very wrong. That's when all hell broke loose and there was lots of consultants shouting and I was rushed to intensive care on oxygen. Last thing I thought was embolisms.

I think I’m going to need counselling.

My DH had bilateral massive pulmonary emboli when he had covid OP. It was certainly very scary. In fact I am certain that had we followed the phone advice given by the Nurse Practitioner at our GPs then he would be dead. But that's another story. I ignored her and took him to A&E and he was in critical care in no time and received very prompt care thankfully.
Like you he was very sick indeed and did suffer right sided heart damage, but 3 years on he is fine. He gets breathless a bit more easily than before but that's about it. He was on anticoagulants for, if I recall rightly, 6 months afterwards but is on no medication now and has had no further significant problems.
Obviously everyone is different but people can, and do make good recoveries from these things. I understand why you are frightened - we certainly were and it's the only time I have ever seen DH cry as he really thought he would never see any of us again as he was wheeled into A&E. But focus on the here and now and try not to imagine the worst. You won't get better over night but take things one step at a time and hopefully all will be well. They will assess your risk of future clots when they decide how long you need to be on anticoagulants for, but cross that bridge when you come to it.
I hope you feel better very soon.

My DM had one about 10 years ago, early 50's. Likely caused by obesity. She had the complication that she had internal bleeding at the same time so low blood count and very unwell. Blood thinners were controversial because of the unlocated internal bleeding but she did take them for about 6 months. The PE left very bad scarring on her lungs so she now has reduced lung capacity and gets very out off breath, despite significant weight loss.

She had another blood clot about 2 years ago (8ish years later). She was absolutely terrified the second time around, but she had pain in her leg and was able to self-diagnose and get to hospital quickly. Again, on blood thinners for a few months. Has been fine since, and has lost even more weight. No other risk factors, so not sure what the likelihood of them recurring are.

That’s good to hear. I’m still in the crying stage.

my dh is beside himself, never seen him cry so much xx

Significant multiple bi-lateral (both lungs) PEs 6yrs ago.. Consultant told me it looked 'like spotty dick in there!' .(this was 6 weeks after multiple rib fractures)
Uneventful recovery and still here and healthy..
(Took a while for the breathlessness to disappear but 6 rib fractures didn't help!)
Good luck OP...
I'm on Apixaban for life and it's not something I worry about now to be honest..

OP positive story from me. I had one when I was 23 - cause unknown, but possibly related to the contraceptive pill. I am now 53 and have never had another clot. I can't take certain meds but other than that I'm fine. I was in hospital 10 days and it was awful at the time. Sending you positive thoughts.

I had counselling too OP.. I was on morphine and pregabalin (because of rib fractures) and high as a kite so don't really remember it much but 6 mths later it hit me like a brick... critical twice in 6 weeks...
Take any counselling offered..

I’m now waiting in the discharge lounge to go home. Waiting for the meds.

I had a pe several years ago. Was in hospital for a few days after waking in the night with bad chest pains. My husband called an ambulance. A blood test in an and e quickly diagnosed the pe and they gave me blood thinners immediately. It was a very scary time. You will likely go on the inr protocol where you have a weekly blood test to measure the thickness of your blood and also have to go on warfarin. Those of the warfarin will be altered in line with how thick or thin that weekly blood test is. I was on warfarin for a year. I found the constant checks very reassuring.

I’ve never had another pe although I’m certainly more wary of the symptoms now.

I’m sorry you’ve had this. Try and trust the medical treatment and process. Hopefully you have plenty of love and support around you. Get well soon.

Aww OP it really is a very scary thing to happen and I can't say that fear will leave you for a while at least but it will leave eventually!

I had multiple PEs in both lungs 10 years ago. I spent just 1 night in hospital which surprised me as I had been told I had very nearly died but I think once you're on the meds then thats all the treatment you need. It took me about 6 months to come round fully (just short of breath and tired a lot in those first months) and then about a year/18 months more for the anxiety around it all to start settling. Now at 10 years out I do still have that short burst of fear if I'm really unwell or if I need to go for surgery etc. I've had 3 surgeries since then and the Drs are always well equipped to deal with the risks and have my aftercare set up for blood thinners which I take for around 6 weeks after surgeries. I stopped taking the initial blood thinners a year after my clots as they were causing horrendous periods plus giving me even more anxiety about bleeding out so they allowed me to come off them.

It was so surprising to have happened and felt so surreal that now I look back and think OMG how crazy was that that I wasn't even going to stay in A&E that evening as I felt like I was wasting everyones time. I'm just so thankful I did and it then led me to start looking after myself more and not sitting around/lying in bed when I don't need to.

I had bilateral PEs the end of 2022 age 31. Looking at my CT scans at the time my lungs were more clot than lung. I also had right side heart damage.

Following a stint in HDU I was on rivaroxaban for 6 months. Then came off them. I had surgery for an unrelated issue last August and was given the clexane jabs for 7 days afterwards.

I'm under the haematologist who firstly put me on apixaban but my periods were horrific. I'm now on dabigatran for life and my specialist is comfortable with me using the Nuvaring again which has sorted out my periods.

My lungs and heart are completely healed. I know it's terrifying at the time but it does get better.

Best of luck 💐

My eldest DD had bilateral PEs in 2021 age 18. The larger one caused part of her lung to die off.

We don't know the cause, have been told either Covid (but tested negative throughout) or contraceptive pill (she'd only been on it 2 months). It was a totally terrifying and traumatic experience so I completely empathise with you . It was also during peak COVID restrictions so I couldn't go into hospital with her and she was so out of it she wasn't replying to messages. I ended up crying down the phone to a nurse who kindly got the Dr to speak to me and let me know that DD was still alive as I didn't know what was going on. She was very, very lucky that a locum GP at our surgery spotted the signs and sent her straight down to the hospital. I have no doubt he saved her life.

Recovery was fairly slow, she was in excruciating pain for a couple of weeks afterwards, and the breathlessness, mild pain and fatigue continued for many months, so do take it easy and don't try to push yourself too hard whilst your body recovers. DD was on Apixaban for 2+ years but is off them now. Mentally she has found it very hard. Every cough, twinge or pain in leg puts the fear in her (and me!) which is totally understandable. She has put on a lot of weight due to comfort eating, although she is now back playing sports she still tires easily and lacks the stamina she had pre-PE.

We have found the follow-up care to be absolutely rubbish - basically non existent - she was discharged from haematology without ever being seen face-to-face or having a single test after she left hospital despite being a fit and healthy 18 year old girl who developed PEs seemingly out of nowhere! I've decided to pay for her to be seen privately and get some blood tests done for clotting factors that the NHS have failed to do. Obviously it would be really vital to know if she does have any clotting issues if she ever takes a long haul flight or has a baby.

All the best for your recovery OP

I don't understand why the people who had no explanation to the cause aren't on blood thinners for life. I've been told I have too and if I don't need to be on them I'd rather not.

My OH had one in his 30's. He's been on medication since and had been 100% physically fine since. Fit, healthy, doesn't impact his lifestyle.

I think he's struggled a bit mentally though, worrying about whether it will happen again. But he's been constantly reassured by his doctors and years on is much better.

Its an absolutely terrible shock, take care of yourself x

I’m home finally. Thank you for all the kind words.

Try and have a good nights sleep OP ..let us know how your doing in the morning, I will be thinking of you.What a time you have had bless you! x

I had multiple small ones following a vein op. It came in suddenly and took a fair while to recover from. Now I will have to take thinners if I have any procedures. Do they know what triggered it?

And rest and recover

It’s awful at the time, but you do get better. The pp who said the mental side was hardest is right in my experience. Mine was nearly 8 years ago, post c-section, and it was terrifying at the time. I then had panic attacks for about 6 months afterwards. But, once I was off the warfarin I was fine, and have stayed fine since. The more modern anti coagulants are easier to take - I had warfarin so I could breast feed.

Wishing you well OP - go easy on yourself.