I’m a mess - 4 days post discharge for massive bilateral PEs

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Hi all

Had a knee op 3 weeks ago, woke up 13 days ago just before 3am and experienced heart palpitations and shortness of breath (which I’d had for a couple of days previously but explained it away). Ambulanced to A&E who pretty rapidly diagnosed large bilateral PEs and heart strain.

Was on CCU for 4 days and also had an IVC filter inserted once they located the original DVT (behold my bad knee). Was on thinning injections until my discharge 10 days later and was put on Rivaroxaban.

I have been a wreck since I’ve been home, ended up back in A&E last night due to a bit of blood after a coughing fit, they did an ECG and saw a small change, cue me getting into a right state, they checked my ddimmer (still elevated but that was expected) and troponin (negative thank god) and sent me home as were happy that the change was nothing to worry about.

I am just an absolute mess; anxiety, panic attacks, crying regularly. It doesn’t help that I am still very much incapacitated with my leg (had quite a big op).

I’m just so scared at the time, and am having flashbacks of the night it all happened.

Anyone got any advice/words of wisdom? 

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8 Replies

  • Posted

    Hi I am so sorry for what's happening to you.  Part of the symptoms of PEs is anxiety and panic attacks, this is normal ( not all have it tho) I had symptoms just like you, also had right heart strain, it takes time for the blood clots to be absorbed by your body, mine was 6 months or longer, had hundreds.  But you are on blood thinners and hopefully that covers you and keeps your blood thin.  I am on warfarin and dose my self according to my INR.  I also made a few visits to emerg panicking, I think with time that lessens, but if you are concerned go back.  Are you using oxygen?  Sometimes oxygen releaves the symptoms.

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    • Posted

      Your experience sounds v similar to mine Canadagal. I’m sorry you’ve been through it too.

      No I’m not on oxygen, they took me off it after about 4 days and my spo2 has been pretty stable (between 95 and 98) since. The doc yesterday was very understanding and said to come back any time and acknowledged that I’ve been through a life changing event which will massively affect me psychologically. 

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  • Posted

    Hi Katya,

    Sorry to hear about your post-op problems. I am afraid the anxiety will linger for a while, but it sounds like your doctor is aware of this....good for them, as it is not always the case.

    Thankfully, you know the cause of your clots and are being anticoagulated. The anticoagulants reduce the likelihood of another by quite a healthy margin and knowing the cause means you can come off them later. You will find it easier with a bit of time and rest.

    I knew nothing about PEs when I got mine, and had very little information from the medics on what to expect - so ask away for anything you need to know.

    All the best

    Peter

     

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  • Posted

    Katy so sorry to hear you have been through a very similar experience to myself last year. I have unprovoked bilateral pulmonary emboli last March with a very heavy clot burden which needed to be thrombolysed and a week on ccu. Recovery is very individual for us all.  My last year was a rollercoaster physically, emotionally and physiologically.  Time is a great healer Katie and it will get easier. Crying is very much part of the healing process so cry as much as you need, talk about it as much as you can. I joined a pe survival group on Facebook which I find great as you can be in touch with many others who have gone through the same. Hugs to you and don’t be so hard on yourself. What you have been through is very traumatic but you are stronger than you think and you survived it like me 😘💕

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  • Posted

    Hi I had a pulmonary embolism clots on lungs at the time I was very scared and panicked in hospital I was put on oxygen. I understand how you feel. While in hospital I spoke to a Councillor this did help at the time.  It changed my life I had to stop the gym I think there should be more support in hospital especially when struggling to breath and having panic attacks. Cognitive behaviour books helped me to change the way I think about things.  Belinda
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  • Posted

    I was the same way when I was having horrible charlie horse pain in my calf , never thought of blood clotts. I also had back surgery 2 months before but was unsure if it was due to surgery. I also had difficulty breathing as well did ct scan and found multiply cloths in both lungs as well and one behind my knee and the one in my calf.  I was admittted and put on Eliquis for 6 months and did another ct scan then. all was clear there I went off the Eliquis and not 2 weeks later I was at my Cardio Dr who thought my breathing was not normal so he ordered another ct scan even thought I just had one 2 weeks ago. Before I got home from my scan I got  a phone call to go back to hospital. Tallk about being a mess. the end results now are to stay on the blood thinner for the rest of my life i'm 66(F) not ready for all this and I want to know why what causes this .I want to do some kind of testing may to see if genenic I need to know this. No background in my family that I am awhere of. All I can say is be strong and think positive I know this is easier said then done. Just what out for any abnormal bleeding being on blood thinner. I get bruised real easy and does not look pretty. 

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  • Posted

    Thankyou all for sharing your experiences. Currently back in A&E due to intermittent shoulder pain - eugh this is horrid.

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