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Pulmonary embolism advice please!

Posted , 23 users are following.

beth97413
beth97413

Hi,

I'm 22 and am in hospital with a PE about to be discharged. Have been in here over a week now.

I'm wondering how long it took for others to recover from this? Like how long off work etc?

I'm really scared about all of this!

Thank you

1 like, 52 replies

52 Replies

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  • Curlyhairdo
    Curlyhairdo beth97413

    Posted

    Hi Beth

    i had DVT & PE in 2003 & currently have more PE's. I've been off work since 16 Jan with it but it can vary. Go back to work when you feel ready. Listen to your body. 

    Im due back 30 March. I'd continued to have palpitations and out of breath.i was due back yesterday but had my sick note extended. I'm feeling a lot better now and should definitely be ready to go back on 30th...sadly that's my birthday!!

    youll be fine if you listen to doctors and your anti Coag nurses.

    good luck 😃

    • Supertractorman
      Supertractorman Curlyhairdo

      Posted

      Hi Curlyhairdo,   Interested in your comment about anti Coag nurses,  Which dept do they work for and are they knowledgeable and helpful on the subject.
    • Curlyhairdo
      Curlyhairdo Supertractorman

      Posted

      Hiya Supertractorman,

      I go to my local doctors for my INR blood test and it's sent off to the hospital. Later that day the anti Coag nurses call to tell me my warfarin amount to take.

      They also phoned me to talk through what I can and can't do with PE's, what to expect etc.

      I'm not 100% sure which department they are part of but they sit in the oncology ward at my hospital.

      They were great in 2003 when I had DVT & multiple PE and have helped this time as well. If I have a question, I can phone them, leave a message and they phone back the same day.

      I'm not sure if all hospitals have them or whether I'm just lucky. They seem to be the experts.

      Hopefully they're in all hospitals.

  • marlo32655
    marlo32655 beth97413

    Posted

    Dear Beth,

    Recovery time is really dependent on how extensive the clot or clots are and how much supportive care you need such as oxygen. I had massive clots throughout 4 of 5 of my lung lobes 14 months ago and recovered very well within 6 weeks and went back to work. Unfortunately I was just hospitalized this last weekend for another PE and will be off work at least two weeks. My first episode was triggered by having a hysterectomy and then two weeks later an emergency appendectomy.. This time I had minor pelvic day surgery and was giving myself Lovenox blood thinner injections as a precaution after the surgery and still got another PE. The important thing is if getting the PE didn't kill you when it happened and you are receiving appropriate anticoagulant, therapy survival rates are extremely good. I hope you recover well and God bless you!

    Sincerely, Marlo

  • acrdpt
    acrdpt beth97413

    Posted

    Hello Beth, I had Bilateral PE's about 3 weeks ago and was in hopital for 12 days. I to am really scared, I am finding it so hard to get reliable information.

    Currently I am on sick leave until mid April. i still get very tired with minimal exercise and they are still trying to regulate my INR, but I feel I am slowly getting better. 

    I am just listening to my doctor and hoping for the best.

  • beth97413
    beth97413

    Posted

    Hi guys,

    Thank you all for your replies.

    I'm hoping it won't happen again but you never know! I just feel like I haven't been informed enough abour my recovery and what I should and shouldn't do!!

    Best wishes to all of you

  • Allexie
    Allexie beth97413

    Posted

    Hi Beth

    I was diagnosed with a DVT/PE on 3rd Jan this year.  Strangely I have more discomfort now (leg swelling/pain and chest pain) than when first diagnosed.  It would seem that this often happens tho and I have been told that the chest pain is pleurisy from the recovering PE and that the leg problems often take a long time to resolve. (6 months has been suggested).  All in all tho I do feel much better and am almost back to doing all the normal things again.  I just tire more easily so I just try to listen to my body and react accordingly.  It is a really scary thing to happen and I'm afraid you really have to be pushy to get any answers.  It seems that this problem falls in so many different camps, (blood, respiratory, heart for eg) that no one seems to take overall responsibility.  Good luck with it all!

  • Getdeeper
    Getdeeper beth97413

    Posted

    Hi Beth

    i understand your concerns. I had a PE in January and it scared the hell out of me to be honest. Although I was impressed with the help provided by all NHS staff involved in my care, advice on recovery has been terribly inconsistent and confusing. One doctor said I'd be ok to go to work in a week or 10 days and others said it could take months. Quite frankly that is just not good enough and I'm left wondering why such variance.  6 weeks on and I actually feel marginally worse than when I was diagnosed. Curiously my consultant said that the breathlessness, tiredness, cough and chest pain are unrelated to the PE. So why do I still feel rough? He didn't know but suggested anxiety....which really annoyed me! So although I don't feel ready, I'm returning to work tomorrow. 

    The bottom line is that for some reason it is difficult for doctors to estimate recovery or even link symptoms to the PE. I sincerely hope you get better advice than me because uncertainty just makes things so much worse. 

    Whilst I'm not as young as you, I am still quite young for a PE and I just want my life back ASAP. 

    AJ

     

    • Curlyhairdo
      Curlyhairdo Getdeeper

      Posted

      Hi AJ

      I wouldn't return to work unless you are ready to. My PE was caused from an operation and being immobile. I was diagnosed on 16 Jan with bilateral PE in the main pulmonary arteries. I'm still off work and will be returning to work on 30 March, I was due back yesterday. I had still been having palputations and been out of breath. I'm starting to feel a little better so feel I'll definately be ready to go back then.

    • Getdeeper
      Getdeeper Curlyhairdo

      Posted

      Thanks Curlyhairdo. What you're saying makes so much sense but it's hard not to start to doubt yourself when the Respiratory consultant is basically saying that I'm imagining things. I've felt chesty and unwell for so long now (both before and since diagnosis of PE) that I've forgotten what 'normal' feels like. What I do know is that I'm still coughing and talking a lot or any kind of physical exertion still leaves me exhausted. If anything I feel slightly worse since i started Warfarin. Just don't know what to do about work but I have to get back to something resembling a normal 

      life.

    • Curlyhairdo
      Curlyhairdo Getdeeper

      Posted

      Maybe your body doesn't like the warfarin too much?? I'm no expert though, just throwing in suggestions.

      hope you find what is causing it

    • marlo32655
      marlo32655 Getdeeper

      Posted

      Your symptoms are most definitely related to the PE!! I'm sitting here now having more chest pain than I did in the hospital and they want to rescan me if they keep up when I know from previous experience last year they get worse before they get better. I've had 4 CT scans in a year and I read that more than 2 in a lifetime increases cancer risk significantly. I'm off for 4 weeks with this latest round and hope that will be enough. I hope you get better quickly!

      Marlo

  • jen50318
    jen50318 beth97413

    Posted

    Hi.

    I.had my 1st PE at 22. I'm 34 now. Was in hospital for a week and then back and fourth for inr management. I was thinking I could go back to work after a week or so. But my Gp said I.was mad and I had 9 weeks off

    last yr I had another one and I.was on maternity leave so didn't get much rest with a little one

    I'm lucky now as my.gp does the inr test with a finger pick.and instant result/dose

    It is frightening and I did go.back to a&e a couple of times but all was ok

  • dinew
    dinew beth97413

    Posted

    Hi Beth  I  had a PE after havine surgery.  My operation was the end os September and I didn't return to work until January. I didn't know I had a PE until I found it difficult to walk and talk at the same time and also had a constant ache in my back and shoulder.  Take it slowly go back when you feel ready - could you go back to work on reduced hours for a little while whilst you getting fit again? All I can say is take it slowly,if you've been off for a while you're going to be tired from that as well.  Wishing you a speedy recovery x
  • Supertractorman
    Supertractorman beth97413

    Posted

    After reading many of your comments it seems many of us find it difficult to get answers and where to turn to when suffering similar pains in the chest and leg with the worst worrying thing is when the chest pain resembles the pain I had when having a Heart Attack. I also find if I use my Nitrolingual spray used for help in case of a Heart Attack it makes my Chest Pain related to PE ten times worse.

    I suppose I have never come across these Anti Coag nurses because I am on Riveroxaban that does not require the blood tests that Warfarin does.

    • marlo32655
      marlo32655 Supertractorman

      Posted

      I'm on that drug too - Xarelto is it's name brand and it is so much easier than when I was on warfarin because they don't have to monitor INRs.
    • Supertractorman
      Supertractorman marlo32655

      Posted

      My Doctor tells me in the next 12 months there is to be a moritorium on Riveroxaban as it is still experimental yet. One Registar I spoke to thought there were better results with less chest pain when Warfarin was used and monitored.
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