new and very scared

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hi all 

45 yr old lady was diagnosed 10 weeks ago dvt leg n pe both lungs today yesterday felt puffy and 2day the same so scarey as live o my own just feel so alone and scared and 2day wen i stareted ro get the pain in my lungs around the my back i get so frightened and panicky reading the post i fink most people do but u feel so helpless wen it happen hpe i get a reply 

wish everyone well 

paula x

 

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16 Replies

  • Posted

    Hi Paula

    So sorry to read that you are feeling alone and scared.  I had my DVT/PE just over a year ago and I live alone too so I know just how frightening it can be when you get the chest pains.  Just keep reminding yourself how fortunate you have been to be diagnosed and treated in time.  Presumably you are now on some sort of anticoagulation therapy?  I'm afraid that it does seem to take a long time for most people to get back to anything like normal after such a serious event and it's not just the physical aspects that can be so devastating - the psychological effects can be

    as debilitating.  Just be kind to yourself and dont push yourself too hard too soon and dont be afraid to seek help if you really, really are worried.  This site is a wonderful place to get some moral support from people who really understand what you are going through so post away whenever you need to.

    I hope you have a calm and restful night's sleep and feel a little better tomorrow.

    With kind regards

    Alex x

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    • Posted

      hi alex 

      how did u cope all i seem to do is cry i have a lot ggoin on atm andthis really doesnt help feel like i take 5 steps forward n 10 back feel so short of breath since saturday and feel the same today not sure if its me or a sympton i just dnt know anymre it feels real

      paula x 

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  • Posted

    Hi Paula,

    Sorry to hear about your troubles. To reassure you - what you are feeling seems to be the normal sequence of events after DVT/PE.  Acute anxiety can be one of the signs of PE and seems to remain for a while afterwards.

    Pain in the lungs can occur afterwards at the sites where the clots hit the lung walls (pleura). 

    Hopefully, things will improve over the coming weeks - for me it was after 12 weeks or thereabouts, but I expect for some it is earlier and for some later.

    All the best.

    Peter

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    • Posted

      hi peter 

      ty for yr reply is the breathlessness normal ? it came from no where i went to the shops just walkin around and it came on and still have it today well sunday and dnt wanna go hospital as feel like i live up there bc of feeelin short of breath and the hurting feeling in my back 

      paula x

       

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    • Posted

      Hi Paula,

      Breathlessess after exertion is pretty much normal. I was shocked the first time I did anything significant at how breathless I became. Wandering around the shops in my earlier days would have been impossible, so I am not surprised you are feeling a bit wobbly. Trouble is, once you have a breathless episode, you tend to panic...which makes you more breathless. That is not much fun....

      The breathlessness should improve once you are resting though, so if it doesn't, don't be afraid to go the the ER. They were super with me and said "any concerns, come in", so you are not bothering them.

      You may find information on recovery after DVT/PE quite hard to find. I certainly did, so ask your specialist and maybe make a list of questions for your next visit - it is normal for the mind to go blank as soon as you sit down in the consulting room.....

      Ask on here too and someone will always be able to tell you their experiences.

      I can't help think some kind of help line would benefit recoverers, but in th absence of that, post on here an I will answer if I am awake.

      All the best.

      Peter 

       

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    • Posted

      hi peter 

      ty u for yr reply u mke so much sence n helps wen sumone else says it bc u still fink it cld b something else smile ty so much u dnt know how gud it is to talk to sumone that been through the same am gonna try get sum sleep talk soon 

      paula nite x

       

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    • Posted

      Hi Paula,

      No problem...glad to help if I can. I hope you have a good night's sleep, but if you have any worries, just call for a paramedic. They won't mind.

      Happy ZZZZs

      Peter

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    • Posted

      Hi peter

      slept ok ty still fill puffy again but dnt know as u say panic or anyfing to worry about hate this feeling just wanna feel normal again how do u feel now ? 

      paula x

       

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    • Posted

      Hi Paula,

      Glad you got some sleep - it's good for the healing.

      Not knowing how extensive your clots were, it's difficult for me to say how breathless you would expect to be. It is still early days though, so would expect breathing to still be impacted. They should test your breathing at your consultations - they do with me (every time).

      My breathing is good now - I had a lot of large clots in both lungs, so had breathing issues for quite some time (more than 3 months). Then it suddenly started to improve - I didn't do anything different to cause it, it just happened. (Those years playing the bagpipes finally paid off :o)

      All the best

      Peter

       

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    • Posted

      hi peter 

      do u mean the anticoagulants clinic only ever been once and she just talk i go basildon hospital goin for bloods in a weeks times as ave 3 mre weeks on rivaroxiban the wld ave ad a 13 week course of the tablets so bit worried what happens after that i still feel very tired puffy and generally unwell  mine started with dvt in my calf and then they found the clots in my lungs as i said i was puffy which i thought was due to the fluy bug i had which i thought  i just wanna feel normal again my leg still feels bubbly thats how i describe it and as u know still have pain where my lungs are and the breathlessness which comes and goes how long ago was yours peter 

      paula x

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    • Posted

      Hi Paula,

      I was seeing the respiratory consultant every 2 week for the first three months. Maybe it was because of the extent of the PEs and not knowing the cause in my case. Or maybe just a different health authority.

      Where tqhey know the cause, I know some people come off them after 3 months, as long as the cause has gone. So you need to make sure your dvT is gone before you come off.  They can find that out by doing an ultrasound on the place where the DVT was.

      I was on Rivaroxaban for the first month or so and it did make me tired. Warfarin does too, but not as bad. 

      Mine was in August - I came out of hospital on about 25th Aug.

      Hope the info helps.

      Peter

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  • Posted

    Hi there and welcome :-)

       Rest assurred your anxieties are normal! The majority of us appear to feel the same! 

       I have had two episodes of P.E. I have always had pain since my first one which they say is due to scar tissue. I,too, used to feel petrified when I got the pain and ,sometimes , still do. The second P.E. has taught me to differentiate between the pains! When I had my second clot I felt as though I was being stabbed in the chest repeatedly and it was very difficult to take even a shallow breath by the time I got to hospital. That was almost six months ago and though I still get pain it may be the odd sharp pain that catches my breath then it feels as though I've been kicked really hard. So the two pains have taught me when it's a new problem and when it's the old problem.

       Listen to your body but listen to your head too. Take a few deep breaths if you can and try to keep calm then think to yourself... is this the same intense pain as when it happened? If in doubt though go to the hospital.

      Good luck and all the best to you,

       Cath :-)

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    • Posted

      hi cath 

      mine started with swallen calf sum pain in my bck and funny feeling but put that dwn to the fluy thing i had so by chance they found the ones in my lungs sad  but now feel breathlessness always tired n the funny feeling in my lungs and back it makes me so scared as live onnmy own as recently got divorced long story so only me and i seem to panic guess always been that way sad so never know if its me panicing or a sympton just wanna feel normal again dont like tis feeling or the alments that come with it been on rivaroxiban for 10 weeks now gotta go blood test in bout a week but apart from the first appointment with the anticoagulant department havent seen no one and dont like goggling pe s as frightened wot i read ....... so nice to talk to peple with the same thing most day  i just cry bc im so scared thanks for replying

      paula x

       

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  • Posted

    Hi Paula.

    ​I had bilateral pulmonary embolisms in late September. I still get short of breath.

    ​At first I felt so grateful to have made it through them and then BOOM waves of anxiety took over and then the depression started in. I went to my doctor and got on meds for anxiety and depression. It has made a world of difference.

    ​I do know that it takes a while to get back to "normal" and the "new normal" may be different than how you felt before.

    First off know that  if you are feeling anxiety that is normal after what you have been through. But if you feel you can't cope with it make sure you call your doctor!

    ​I still have shortness of breath but I am not depressed and my anxiety is a minimum now. The doctor put me on generic Lexapro and within two weeks I was feeling much better.

    ​Best wishes for good health.

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    • Posted

      hi patricia 

      thanks for yr reply i started wearin stocks as bth legs fell bubbly n swallen the say i mite have pst wen will this ever end am goin docs to get messured for propa stockins 2morrow 

      thanks paula x

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