Bilateral Pulmonary Embolism

I had a total of 8 bilateral pulmonary embolisms and that was in 2014 and to this day none of the doctors have found the cause of it.. I was 40 at the time and very lucky to have survived but any little pain now scared me to no end. Any adice would be greatly appreciated.
Thank you
Jessica

So true!!! Going tomorrow for the results from hematologist. I had massive Bilateral pulmonary embolism. Ignored signs and symptoms for a long time.Finally broke down and seen Doctor... Sent to ER for cat scan...BAM.! Dude runs out of cat scan room...Saying, "You could die from this !!" I was in shock...Thought I was gonna die for sure.. ER 2 day stay..Scary stuff. Been on thinners now for 6 weeks.Still can't catch my breath. One thing is for sure. Not only do you appreciate life So much more after basically being moments from death. You have been taught for sure, DO NOT ignore your body's signals. Shortness of breath, weird pinching feeling in either leg, strange chest/lung pains....See someone, it might just save your life.

Sounds very similar to my own experience - no symptoms other than a growing shortness of breath over 4-5 days ... day 5 - extreme shortness of breath, with dizziness, sweats etc but NO pain at all.
Called the paramedics who cleared me of any heart issues, and offered "either wait til Monday and see your GP or we can take you in if you're really worried" ...

I went in and within an hour was diagnosed with bilateral PE ... dozens of clots over both lungs - 3 days in intensive care, pumped full of anticoagulants.

Now on Apixaban 10mg every 12 hours for the rest of my life. The good thing about this is that there's no monitoring required, unlike Warfarin that needs regular blood tests.

There was no obvious cause for my PE - no long journeys, flights etc.

I am not aware that my parents (both passed) ever suffered, but I am getting kids and family tested (blood test - thrombophilia screen) to see if there's a family trait - all fine so far!

10 months on and still nowhere near pre-PE fitness, taking Cytalopram for depression that came on (first time ever!) during my VERY slow recovery and Amitriptyline to help with meralgia paresthetica that developed in the early recovery stages.

Bad news - I am still struggling to come to terms with my near-death experience at just 52 years old, (at the time of PE) - reasonably fit even if I am carrying a few extra pounds - pre-PE I cycled to work and back each day, over 10,000 steps and 10+ floors every day, gym and/or swim twice a week - unbelievable!

Good news - I survived! My family, friends and work colleagues have been extremely supportive and I am, very slowly, starting to get my fitness levels back - even though I accept it may never be more than 90% my pre-PE level.

For all men out there - don't be a man about it! If you think you're not well - especially out of the ordinary - don't ignore it and hope it will go away - If I had "waited til Monday and see my GP" I may never have got there!

Simon (UK)

Apixaban - 10mg every 12 hours

It's working for me and, unlike Warfarin, needs no regular blood tests!

Simon

I have asthma, suspected COPD in early stage, and left ventricle diastolic dysfunction grade 1 asymptomatic. Dyspnea is nothing new to me. A month ago I developed bacterial pneumonia and recovered nicely except for the fact that I couldn’t get dressed without having to rest and gasp for air for 5 minutes. Since I am mostly sedentary, it was easy to convince myself that this was just lingering pneumonia symptoms. But then I would walk from my desk to the bathroom and be heaving for air. I think they call it air hunger and I was starving on the slightest exertion. I resigned myself to the fact that this was to be my life and considered wheelchairs, oxygen, permanent disability. I thought of going to ER but the copay is 150 bucks and thought I was overreacting. I also considered that the lvdd had progressed to full congestive heart failure.
I was terrified and on the fourth day, I almost passed out. Let me say that I have a history of DVT but had no such symptoms in lower extremities and also had no chest pain.
When the ER doc told me I had bilateral PE before admitting me, I told him “I thought people always died from that.” He said that I would likely have if I hadn’t come in and because I waited I might have caused lung damage (on top of the existing damage) and/or pulmonary hypertension.
I was terrified and upset that I didn’t take my situation more seriously.
I have to take anticoagulant therapy indefinitely because of my history and because we don’t know where these emboli originated.
I left the hospital with a new lease on life and then I started reading about my condition on the internet (I know, I know)...and now am feeling like my prognosis may not be as rosy as they made it sound. Hematologist tomorrow and I hope to get some reassurance there. For now, it feels so good to BREATHE!

Otherwise healthy 19 yr old daughter with no known risk factors developed extensive bilateral PEs. Had been taking low estrogen birth control pills for 5 months. She’s been tested for many things, all negative. Were the bcp’s the cause??? Doesn’t seem possible but...... Thanks for any thoughts.

I am a lifer warfarin also. Bummer

Unlike many of the other responses here, I was a-symptomatic for the PE. What put me down was a persistent cough that had been hanging on since an allergic reaction I had to some antibiotics I had been on for what had been (apparently) misdiagnosed as walking pneumonia. After a hard coughing fit, I passed out in the garage, and it was only after my wife communicated to the trauma doc's (while I was getting a CT scan for possible concussion) that they thought it would be a good idea to check the lungs. . . where they found the "massive bilateral PE". I will always be supremely grateful for the insight and abundance of caution exhibited by that ER doctor.

As mentioned elsewhere, the size of the clots were such that they ruled out surgery, and decided on 2 hours of TPA to break up the clot, which ended up precipitating a kidney bleed, but otherwise worked like a charm. I spent a little more than a week in the CCU, and a few more in the step down unit. The return home brought with it an opportunity to finally get more than a couple hours of sleep at a time, and within a week or so, I was back at work, albeit with a life long commitment to Warfarin as my friend. I travel a lot for work, so taking a chance that a long flight could prompt another clot is not a risk I'm interested in taking (having learned that once one has a DVT, there's a 30% chance you'll have another).

Needless to say, "you were lucky", and "it was a wake-up call" seem to be understatements given the abundance of caution and concern exhibited by the doctors. Any way you look at it, I'm grateful for the way it went down, and am working hard to make sure I don't do anything myself to foster another visit to the ER.

My exact same story. Only difference being I did not this time experience leg cramp. And I sat in recliner 4 days for an L-1 fracture! Got up and everything went black. Could not get my breath. But after I did sit back down, everything calmed down. Next day checked myself into ER & after being cleared on Covid test, they did C-Scan with contrast for PE’s. Sure enough, had two huge blood clots in right lung blocking ventricle. Surgery two hrs later. TPA & Hepprin Treatment. On Eloquist for rest of my life.

Hello , I am an Eighty-Two year old male who has been diagnosed with COPD.
This started when I had a Bilateral Pulmonary Embolism,the cause of which,I believe, was a deep laceration to my leg followed by a long-haul flight.
The diagnosis was immediate, the clots were dissolved by a course of injections.
I will be on Apixiban (blood thinners) for the rest of my life.

I too have bilateral pulmonary embolisms in large quantity on both lungs, all four corners. I found your description of your symptoms close to mine. When you said to the top of your mouth, I said "that's it". I explained mine to my doctor as a headache that traveled from the top right side of my head INTO my mouth and then to my jaw. I'd never had a headache inside my mouth before. I wish you a full recovery. I'm day four out of the hospital and remain hopeful. I'm on the Eliquis kit AM & PM & Jantoven 5 mg (generic for Warfarin) during the day. I was six days in hospital.