DVT and PE Anxiety

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Hello. I'm a 48 year old woman and was diagnosed with DVT and PE earlier this month, which has been kind of a mystery. I had tons of blood taken while in the hospital and they could not find the cause of the clots. I was put on Eliquis. The DVT had been in my right leg. It took over a week for my body to adjust to the Eliquis. But the leg pain did go away. I am still having shortness of breath but was told at the hospital these clots take a long time to heal. 10 days after my hospital visit, I went back to the ER for chest pains. More tests were done. Luckily, my heart is fine and the doctors think I may have either had anxiety or delayed symptoms. Last night my left leg started feeling slightly sore and has been on and off today. I am terrified it could be another clot, even though I was told that it was unlikely I could get another clot on the Eliquis. I don't know if I am just going crazy. When they found the clot in my right leg, they did not check my left leg. I see my hematologist on Jan 12. I am so grateful this wasn't worse, but I have some nights I am afraid to go to sleep and every pain, ache or twinge has me worrying terribly. Whenever I do feel optimistic, it's short-lived if I start feeling aches or pains. Has anyone else experienced this? I'm a worrier to begin with and being diagnosed with vte and not knowing how they came about makes it worse. Thank you for taking the time to read my post.

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  • Posted

    Janie,

    It is normal to feel anxious after PEs - seems to be part and parcel of the condition.  Whilst in theory you could get further problems whilst on blood thinners, in practice, it is very unlikely. 

    Shortness of breath is likely to linger for a while and, yes, it can take a long time to recover.  I am two years on from mine and I have gone from unable to walk across a room to long walks in the country.  There often isn't a great deal of knowledge about PE recovery. Perhaps a little more for DVTs because they are more obvious (i.e. visible). You may also find people thinking that, because you look ok, you are. Don't be afraid to tell them you are not, if that's the case.

    I am afraid you will probably get all sorts if aches and pains. I sure did (do). I think the PEs catch you off guard and make you forget what is normal, so you have to relearn how to ignore the day to day stuff (or maybe tune them out).

    Good luck and stay in touch.

    All the best

    Peter

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    • Posted

      Hi Peter,

      ?Thank you very much for replying. Everyday seems to bring some new ache or pain that has my mind racing. But reading your reply really did make me feel better. Hopefully in time, I will be able to tune these feelings of anxiety out and become mentally stronger. I am looking forward to my doctor visit. I've got quite a list of things to go over with her. This blood thinner is something else and praying it's only temporary.  I miss what "normal" feels like! smile 

      ?I will definitely post again after my doctor visit. Reading your reply and posts of other people going through this is very helpful. We all seem to have unique situations but it still helps that we are not alone in all of these crazy feelings and symptoms.

      ?I wish 2018 to be a very healthy and happy one for you! 

      ?Thank you again for replying, Peter!

       

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    • Posted

      Hi again Janie,

      It sounds like you are making progress. It takes time, so don't beat yourself up for not being active enough. 

      Stairs and hills are probably for later. This early on, walking on level ground is best.  I remember when I was four months in, I took the dogs up an incline. It wasn't big, but I needed a sit down rolleyes  Came as quite a shock. Moving on to today and I doubt I would even pause - so it does get better.

      Even if you do end up stuck with blood thinners, you will get used to them. The modern ones are particularly user friendly.

      Good luck with your appointment in a week or so.....many questions is a good thing. 

      all the best

      Peter

      p.s. "normal" is much overrated cheesygrin

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  • Posted

    Hiya Janice... sorry that you are worrying about having the clots, but yep this is normal, I think once you’ve had some thing like this, it’s scary as you think you may get another one..

    Two years ago I was fit and going to the gym 6 days aweek, then my breathing started to get bad, and I stopped it, it tuk docs 6 mth to send me to the hospital for a CT scan, as they seem to be saying it was in my mind😧... well they fount multi blood clots

    (PE) on lungs, and was put on blood thinners straight away,, 

    I was told by consultant it would take 2/3 months for my lungs to start and recover, they said they’ve not a clue where my clots came from, as no signs of clots any where eles in my body, so Iv got to stop on blood thinners for life now .. 

    two years down the line, my breathing is no better, I can’t hover or walk up staires without fighting for my breath, Iv been back to see my consultant and he thinks that maybe my heart is going to fast wen I move around, caused by the blood clots going through the heart and in to your lungs, so I’m having more test, and back to see results end of jan..

    It is crap, but you have to try and get on with it, as for most people they DO recover within months of having PE but I can’t say don’t worry as we all worry when some thing like this happens to us, it’s understandable, once you feel better I’m sure you will put it to the back of your mind more.. good luk and keep intouch on how things go for you 🤗x

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    • Posted

      Thank you for replying, Dawn!

      ?My breathing seems to sometimes feel as though it's getting better, but then I still have struggles with SOB. Today I got out of the house, even though it is quite frigid out there! It felt good to be in fresh air and I did a little shopping with my son. I went up a flight of stairs and felt wiped out when I got to the top. I am in pretty good shape, so it was strange to be out of breath once I got to the top. I am trying to take it easy every day and not over do it when I get these little bursts of energy, otherwise I feel like I could take a nap for days! I am trying very hard to be patient and allow my body to take its time to heal, but it's also frustrating too. 

      ?I will report again after my next doctor visit! I wish you well and hope you have a very happy and healthy new year! I am grateful for you and Peter54321 replying. It really did help me feel a lot better. Take care! smile 

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    • Posted

      Yes let us no Janice how you go on... it’s sounds like your lungs are trying to recover for you, mine is the same all the time, since having the PE so I know it can’t be right after 2 years... but I know what you mean wen you say you was fit, so shocks you now that you get out of breath, it will just be a slow progress for you, I use to always walk up the stairs never the lift  but now I can’t walk up stairs and as to be the lift  lol.. but yes sooo frustrating being like this when we New how we use to be.. good luk I’m sure in time you will be fine, and won’t worry so much as time goes on, just very scary how life can change in just a min..

      Happy new year to you, hope it’s a good one 🤗x

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  • Posted

    hi, my heart goes out o anyone who has this. Mine was 3  weeks  after necksurgery. I sat around a lot and was taken off my one a day aspirin. The clot in my lung was a saddleback and huge and the Dvt in leg is big. It is normal to be anxious. My lungs are doing well but i do get some pain in both legs but i had them before my PE so i don't worry...i do worry the one still in my leg will break off. They were amazed how well i breathed with the lg lung clot so i figure if the Lord was ready to take me home he would have then..and that gives me peace . Just remember the thinners will take care of any new clots that might form . I will be praying for you !

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