9 weeks post unprovoked PE

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Hello, I'm new to this site. I'm 40 years old and am 9 weeks post an unprovoked PE. I am on blood thinners at least until genetic testing can be done in 6 months. My concern is, I am still very short of breath and it seems to be getting worse. When I get short of breath, I also getting a rapid heartbeat feeling. I also suffer from high blood pressure (another genetic issue). Occasionally, I also get clammy. My doctors simply say it takes time to heal and also say I can't get more clots while on blood thinners. Has anyone else had this happen? Should I be concerned? I do see a Pulmonologist on Aug 9th for a first time visit.

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  • Posted

    Karen, I think you're going to be fine. I'm new to this too and have found through a multitude of message boards that the shortness of breath will continue for a long time -- months, I'm told.  The rapid heartbeat is scary.  What I do is take about three really deep breaths and blow out slowly.  Also my sister ordered me one of pulse oximeters  -- the thing they put on your finger at the doctor's office. I think she got it from Amazon. I thought it was going ot make me crazy, but she said it would actually make me sane.  When I think my heart is going to shoot out of my chest, I put it on and USUALLY the rate isn't as high as i think it is. I take my deep breaths and watch the rate go down,.  Doctors don't seem to give us much direction because everybody is different, or so they say.  I too have high blood pressure.  Sometimes my blood pressure went way down. I was told to check my BP in the morning and if the systolic was below 100 first thing in the morning, skip my pill. Of course, your doctor may tell you something completely different but it goes to show that everyone reacts in slightly different ways,.

    I have yet to see a pulmonologist, if you can believe it. I had noticed I was s hort of breath but I contributed it to my age (64)  I went to my GP and it was spring so it was assumed it was allergies to pollen.  Several weeks later I was diagnosed with endometrial cancer and they scheduled a full hysterectomy.  Two weeks before the surgery, my leg got swollen and after testing, they found I had multiple clots in my legs.  They postponed my surgery for a month.  Then I suggested they might want to check my lungs for clots (still dealing with the gynocological oncologist) because I was short of breath -- and sure enough, multiple clots in my lungs. Surgery postponed again until August 11th.  So here my biggest worry is the clots -- but I still have a cancer in me. Yikes.  Our bodies throw us for a loop sometime

    The good thing is, you're diagnosed. The blood thinners will do their job by preventing new clots from forming and kind of "cementing themselves" down so they don't move.  Then your body will start working on absorbing the clots. But that takes a long time. Months. Maybe a year. So be patient with yourself.  Try to keep calm and let your heart rest.  There are days when I think "Oh -- ALL BETTER" and two days later I feel pressure in my chest and think "Maybe not"  I think this is common from all that I have read.

    Good luck. You can do this

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  • Posted

    Karen,

    Not much I can add to Susan's superb summary (it's a pity such good information isn't given to every patient after a PE, but it's not...).

    I am 11 months post PE and would say that I have only just got breathing back to normal, so it can take a while. Hopefully, that would be worst case, as I did have a lot of large clots in both lungs.

    I don't know if my experience was typical, but I did find the improvement came in fits and starts - nothing much for weeks or months, then a rapid improvement.

    Most times you are not going to get more clots when on anticoagulants, but I am not sure they are 100% correct saying you can't get fresh clots when on thinners - it would be rare, but it can happen. My hospital said that if I thought it was happening again, to come straight in.

    Just to support the 'we are all different' view - I have very low blood pressure, so hopefully blood pressure (high or low) is not a major factor here :o)

    Good luck with you recovery (and you to Susan!) and keep taking them tablets. :o)

    Peter

     

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    • Posted

      Thanks for your reply and kind words.

      Yes - I must agree that the thinners are SUPPOSED to prevent the clots from forming at some point, but nothing is for sure.  Also, when the cardiologist told me that my lung clots and moved beyond the danger zone and parked themselves in some cappiliaries, I asked if they could ever move backwards again.  The doc said "No.they usually don't. But we never say NEVER"

       

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  • Posted

    Hi Karen

    Im 34 and i was diagnosed bout 3/4 weeks ago and my shortness of breath is slowly improving.. mind if i over do it i get bad again.. just trust your body.

    We moved hse last week and although i wasnt allowed to do much i noticed it get worse again so i rested up.

    Im struggling with my thicker stockings in this heat which im finding very hard..

    As im told just take it easy dont do too much..

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