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

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.

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

 

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 😘💕

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

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. 

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

sorry for your issues keep me posted. Hope all is well