chest pain post PE

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hi i am 54 yrs old and i was diagnosed and treated for a very large unprovoked saddle pulmonary embolism in november 2014 and as i am now at a very high risk of getting another blood clot on xarelto 20mg for the rest of my life. the blood clot has gone but i still often feel exhausted and i am still getting regular chest pain 10 months on from the PE which really frightens me. is there any test that can be done to see if there is damage to the lungs from the blood clot? i would really like to hear from anyone who is having this same problem. deb

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  • Posted

    Hi Deb

    I had a large saddle PE diagnosed at the start of January this year, thought to have happened after a couple of long haul flights.  I am on Warfarin now for life.  I am still getting chest pain too.  I have been to my GP about it who referred me to the acute medical assessment unit and once I have been to A & E of my own accord.  Various 'experts' have suggested it could be pleurisy or scar tissue from the resolving clots but my consultant dismissed those theories but could not give me any idea as to why I have these pains.  It is all very worrying!  I am curious as to how you know that your clot has gone?  Did you have a follow up CT scan?  I would love to have the reassurance of knowing how my clots are progressing but my consultant does not do a follow up CT.  A couple of months ago I had a heart ultrasound done, (heart was enlarged on RH side due to strain it was under with the clots), and I am still waiting for the results of that.  My 6 month routine follow up appointment is now nearly 3 months overdue despite my nagging.  When the chest pains get really bad I feel like a ticking time bomb....just waiting to go boom!!  Still, I guess we should be glad to have survived and still be here........

    Best wishes

    Alexandra x

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    • Posted

      Hi Allexie thank you so much for your reply. I found out my clot had gone at my 7 month follow up appointment in hospital that's how long it can take to go once you are on daily blood thinners and my oxygen levels were very good. I too have read about scar tissue causing damage to the lungs. and wondering if that is what is going on with me.Yes i too often feel like a ticking time bomb and yes we are both lucky to still be here to tell the tale.... Stay in touch and let me know how you get on Big hugs deb x
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  • Posted

    Hi Deb.  I was diagnosed with multiple PEs 2.5 years ago, after a DVT in the leg (undiagnosed until after PE and no symptoms).  I was on Warfarin for 6 months.  A year to the week after, I developed similar symptoms and was then diagnosed with chronic bronchitis!.  I still get chest pains, now 3.5 years after.  GP said I have scar tissue in the lungs and have reduced lung function, which is life long.  Panic stations hit in when I get a cold or anywhere near someone who smokes as it causes me chest pain and breathlessness, and of course coughing. I am trying to get fitter, and have walked miles mostly on the flat, but can climb stairs OK.  Hope this helps, hope you get some relief soon.
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    • Posted

      Hi Cathy thank you for your helpful reply. I have been to my Doctor and put on painkillers for the damage to my lungs. It has certainly had a huge impact on my life. Stay in touch. Deb
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  • Posted

    Hi I'm 25 yrs old and have been PE free for about 2 years now. I first got my clot from an accident I was in. I had injured my left leg and noticed it continued to swell. Went to the dr and they found a clot. Was put on Xarelto and 2 weeks later the clot had moved from my leg to my lung. They switched me to Coumadin and about 5 months later the clot was gone, confirmed by CT scan. Idk if this is spelled correctly but there is a blood test called a D-dimer that checks for fragments in the blood stream. I had. 3 CT scans in a 5 month scan so they finally told me about this test. I am pretty physically fit and am in the Navy, wasn't medically disqualified, but to this day I still have chest pain randomly. Sometimes it sharp and piercing and sometimes it's just sore. I was told by my Dr that it was from the scar tissue from where my clot was. Other occasions it hurts so bad I have to stop everything I'm doing and stand there til it passes.
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  • Posted

    Hi guys I too have suffered a large PE that caused big collapsing of my lower lobe air sacks that went untreated for a while and massive DVT that took up my main vein in my leg... I am almost 3 yrs out and still not great have periodic low o2 high heart rates and bad chest pain!! I'm extremely exhasted when my o2 is low I get horrible headaches and sometimes my leg muscles turn to rocks!! My Dr dosnt understand why I'm still hurting still I was told in past had pulminary fibrosis which is scarring but my chest always hurts when it's bad my o2 drops and my heart rate goes up!! My new Dr cut my pain meds in half not on much but 4 7.5 hydrocodone ibprophen and I'm panaking because I am suppose to do 800 mg ibprophen during day and 2 pain pills at night and it's not helping I'm chasing the pain now and I can't breath deep at all so my breathing shallow again which isn't good!! I'm scared of this new Dr to be honest with her so wanted to see if I was not the only one which makes me feel better I'm not l!! What helps you all with your pain??
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  • Posted

    Hi, Deb - Thank you for starting this discussion. I'm 63 and had PE a little over a year ago following a serious DVT six years ago. I get occasional chest pain but am still extremely breathless and sleep 10-12 hours every night. The ongoing symptoms are really frightening. The consultant told me I should be fine six months post diagnosis but I'm not. I've read elsewhere on the web that some people don't feel completely recovered after two years. I am keeping a diary of my sleep and breathing issues and going to my GP with it. I think we all have to be very assertive about our post-PE symptoms because I am unconvinced that the received wisdom on recovery is correct.
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  • Posted

    Hi everyone, I'm new here. I was searching the web for recurring PE symptoms after stopping coumadin, and ran across this forum. I am 48 years old, and developed a PE one week after major abdominal surgery (I had a 7 lb benign fibroid tumor removed). I was put on coumadin for six months, and I just went off of it about a week ago. Over the last two days I have noticed pleuritic chest pain. First it occurred on my left side a few days ago and now on my right side which is where the PE was. Tonight it wadexcruciating when I would bend at the waist. It is very worrying. Unlike some of you, I was not referred for any follow up tests I was just told to stop taking the coumadin after six month. I'm wondering if I should demand a follow-up CT scan or some other follow up test to see if the PE is actually gone. I had test for a clotting disorder and have no other risk factors for DVT or PE. Thanks for any help you can provide and thanks for starting this thread.
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    • Posted

      If you're having excruciating pain I would definitely get more medical advice ASAP.
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