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Post bilateral PE 4 months pain

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jill05020
jill05020

Hi I had a bilateral embolism this past May. I am so grateful to God I'm still here. Since then I just recently found out from a contrast CT that I have no more clots in my lungs. Not sure about anywhere else. I have been having strong pressure, discomfort, weird chest feelings and sometimes it affects my breathing to a point as well. I have also had wooziness as well. I feel sometimes as though I will pass out BC of the woozy feeling. I had concerns about pulmonary hypertension but every doc I've seen doesnt suspect this at all. I also feel irregular heartbeats and slow heartbeat sometimes.I am on warfarin also. Is it possible this is my lungs still healing? Has anyone else had these issues? I feel like nobody understands what I am going through. Any thoughts would be appreciated! Thank you!

0 likes, 4 replies

4 Replies

  • acrdpt
    acrdpt jill05020

    Posted

    Hi, I also had bilateral PE, in February. I have had all the symtoms you have  discribed, and now have tablets for the irregular heartbeats and pulpitations. I am on Warfrin for life now. I still get strong pressure and discomfort in my chest that stresses me sometimes. I think this is all part of the healing process and we all take a different amount of time to recover. Listen to your body, only you know how you are feeling and what you need. Good luck with your continued recovery.
  • Allexie
    Allexie jill05020

    Posted

    Hello there

    I had a large saddle PE in January of this year and also have all the symptoms you mentioned in your post.  I am on Warfarin for life.  I envy you having the reassurance of a CT scan showing that your clots have gone!  Since being discharged from hospital in January I have only seen my consultant once at my 3 month check up and he could offer no explanations for any of my remaining symptoms, neither could my GP or any of the  doctors in A & E after a couple of visists.  I am still waiting for my 6 month check up which is now 3 months overdue.  From what I have experienced the attitude of the NHS is....'you're on anti-coagulation and you're still alive, be thankful you survived....now go away!!'  

    With every good wish for your continued recovery

    Alex x

    • jill05020
      jill05020 Allexie

      Posted

      Hi Alex and acrdpt, Thank you so much for responding to my post. I felt like no one had these symptoms like me and it's such a relief to hear this especially with the chest pressure so strong and shortness of breath. It's truly a scary process and still is.  It seems to me that either doctors don't have as much knowledge on blood clots or recovering because they don't seem to think these are symptoms to look into or like you said Alex, "you survived, now go away". I pray that I will get a doctor that will listen and get me tested in the right way. I had read another post of a friend of my moms and she had the same symptoms as I was having after her embolism and was in and out of the hospital like I am all the time, and it took them 7 months to find out that she had  thombophilia.  I pray that I don't have any additional problems and conditions and that this will just heal, because now my question is if the blood clots in my lungs are gone, why are the symptoms as strong if not stronger now? I can only assume it's my lung tissue. My heart rate has gone lower as well which is weird for me. But the shortness of breath gets really bad to where I can't focus on my daily activities, and I'm nervous about exercising because I had an episode. I don't want to stop living because of this. God has a reason and it will get better, but I really really hope soon, because right now this is really affecting me. We will get through it, maybe just very slowly smile
  • tina2222
    tina2222 jill05020

    Posted

    Hi I have bilateral PEs three to be exact . Four weeks ago I feel down the stairs and damaged my ligaments badly still unable to weight bear. The following week I was told I had my PEs. It's been very difficult on crutches which don't help with breathing. I too get bad chest pains I'm told it's the blood clots touching the lining of my lungs. Sometimes they are that bad they stop me in my tracks. My breathing has improved but as iv said I have only used crutches to go as far as the car at times this feels like iv climbed a mountain. Some days I'm low in mood as it feels one step forward two back. I just want to feel normal again and wondered how long people had off work . You start to feel like people think your dragging it out a bit.
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