Scarring post PEs

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I had hundreds of PEs in both lungs in 2013.  They were undiagnosed for 5 months and could have easily died.  Repeatedly was told it was anxiety.  After my suggestion, a pulmonary CT was done and a "heavy burden of clots" was discovered.  I have been on warfarin since and for life.  Last week I asked my respirologist why I continue to have crackles in my right lung.  He said it was from scar tissue.  With any virus that goes around, my lungs are susceptible.  This was news to me, don't get chest pain, but am short of breath if I carry things going up stairs.  So that explains that for me.  Glad I found this site, although there are not many recent comments.

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  • Posted

    I understand not recent comments, even me, I have avoided making any. It gets depressing to talk about it sometimes. My boyfriend is getting tired of hearing about it thinking I should just"get over it" and quit being so dramatic. I feel like screw you. You go through it and see how you feel.

    I went to the legion hall because I was thinking of joining because my husband died, I am eligible and I need to get a life of my own. But it was so smoky in there my chest started to hurt. I probably won't subject my lungs to the second hand smoke.

    According to my Dr my life was saved because the clots landed in my lungs had they gone to my heart or brain I could have died. The lungs were the safest place for them to go even though there they still create quite there own set of problems.

    Please don't give up on us. We all have our reasons. And come and go. But we are a very supportive group!!

    Linda

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    • Posted

      It's hard to contain but others don't know what your going through and how the thought of death lingers from time to time. Just take care of yourself, do things that make you happy, and be with people who accept you for who you are...

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    • Posted

      I am sorry I didn't mean anything bad.  I just didn't know.  Some discussion groups that I have joined are old and not used much.  It's true most people don't care about ones health, cuz they have not had near death experiences like us.

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    • Posted

      Windy8000 - my doctor said the same thing - once the clots break off & start moving, they can lodge anywhere. If it's the brain, that's a stroke; the heart, that's a heart attack; the lungs, pulmonary embolisms. Obviously there are degrees of all of them, and not to make light of any of it, but I'd probably take the PE's.

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  • Posted

    Hi canadagal, I thought I would reply as I had what was called by the consultant spectacular amounts of blood clots in both lungs just over a year ago . I am on rivaroxeban for life now too . I had shortness of breath and bad chest pains before , nothing after except a niggly cough sometimes . I have scarring in my lungs and my lung capacity is down to 78% now which is not great . I was lucky to catch it in time and I am glad I found this forum too .

    All I would say is congratulations, as it seems we are both relatively lucky , try not to stress too much as on thinners it's highly unlikely to get any more clots and enjoy every day 👍

    All the best

    James

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    • Posted

      Thank you.  Yes I count myself lucky that I am alive, and often thank God that I was diagnosed even if it was 5 months later.
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  • Posted

    I only had 1 very large PE but for as long as I have been suffering the cough, the pain, the multiple symptoms I think it is very possible I have been suffering thru this for a couple of years and they only found the cause.

    I was my husbands caretaker for 25 years so me having coughing Spasams, shortness of breath fatigue, was pretty common for me. Caretakers don't normally take care of themselves. Now that he is gone grime throwing his own clot to his brain. Taking care of me is easier.

    Except ( humor now) I think my next support group will be giraffe delivery withdraw as I have been watching April for the last 4 weeks lol

    Be safe breath easy

    Linda

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    • Posted

      You are indeed lucky having had 1 large clot and still alive to talk about it.  I had 100's.  I have a CD of CT lung scan, no lie it looked like 2 lit up Christmas trees.  For 5 months they told me just anxiety.  I tell every doctor who will listen to me, " listen to your patients, they know themselves best."

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    • Posted

      on old thread but i have to reply.

      Same thing happened to me, been told for years ive had anxiety, 4 days ago was diagnosed as having extensive multiplte small clots on both lungs. have had lightheaedness, breathlessness for years.

      Drs are too quick to put a lot down to anxiety. 

      hope youre feeling better. 

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    • Posted

      Shame, we are fortunate to be alive.  I am thankful daily that even tho it was 5 months undiagnosed, I was able to be listened to as I suggested it was PEs.  Are you on lifetime anticoagulants?  I am because they don't know what triggered the amount that I had.

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    • Posted

      They want to do a few more tests because same as you they don't know what caused them. Was in shock on Monday when I was told, on Fragmin injections twice a day ATM. IT is all a bit scary canadagal. This forum is great for us all to have a chat and share experiences. 

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    • Posted

      Hi, 

      I know this is an old thread but I had a C section it will be 2 years in July, when they did my spinal I got a horrible pain in my right leg and have had pain and cramping ever since. I saw the dr when my boy was 4 months and she said leg was fine and it’s normal to have that after a c section?! When my boy was 6 months I was feeling really anxious and slightly depressed then the symptoms started, dizzyness,palpitations, fast heart beat, sweating shooting pains all over my body etc. I’ve had 3 dimer tests done and all normal but I still experience dizzyness and chest pain and now weird sensations in my shoulder blades sort of dull pain?? Im In mirtrazapine as the dr had put it all down to anxiety?? My leg is still really painful and cramping but no swelling or redness etc. I just feel like it could be blood clots?? Can anyone help or put my mind at rest? Thank you 

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    • Posted

      Hello Sazzle21,

      I do not know what a dime test is but if you haven’t gotten a ct scan yet do so ASAP- you are describing the symptoms I had for my PE,  shoulder pain being the worst just as I was getting diagnosed (they said it’s referred pain). Unfortunately you have to be your own advocate so if they say you don’t need it, demand it.

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    • Posted

      Thanks for the advice Mia I am going to push for this scan ASAP. The dimer test is a blood test that show if you have a mazzive PE or blood clot part of the clot start to move and they can be found in this test. I’m not sure it’s the best thing or not?? Thanks again 
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    • Posted

      Mia what was your shoulder pain like? Also I have really bad anxiety with it and panic attacks 
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    • Posted

      Hi, my Dimer test was borderline and I had 9 large and multiple small PE's on both lungs! I'm lucky I demanded the CAT Scan. It was 8 weeks after my shoulder surgery. They thought itcwas anxiety too at tge ER. My fingernails were bluish. I knew what it was.

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    • Posted

      My son had high anxiety before he was diagnosed with DVT and PE. I read that PE causes anxiety because it sends msgs to your brain that something is wrong. 
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