Pulmonary embolism

I was diagnosed 4 weeks ago, with bi-lateral PE. My GP was wonderful and sent me immediately to my local hospitals Clinical Decisions Unit where I was diagnosed within 3 hours. This diagnosis has affected me both physically and emotionally but I am being positive and would appreciate any advice from those further down their own road to recovery. I was physically very active and wonder how others have progressed or possibly returned to there pre- PE state, and over what time period. I am taking Warfarin and drinking over 2L water per day to remain hydrated (dehydration plus other factors possible cause of PE).

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  • Hi gel,

    I understand what you mean, in that having a PE is both physically and emotionally draining. No one should have to go through this, but unfortunately some of us do.

    You had a bi-lateral, I really feel for you, at least mine, 20 years ado, was only uni-lateral, somewhat easier. But I still remember the details.

    I can't remember how long the Warfarin was for, but I believe it was not for long, I think it's more a case of DNR result's led.

    The emotional side can be harder to deal with, it's not everyday you are brought up by your stocking tops, and reminded you are not invincible !!

    Just take it on the chin - and remind youself to look after your body in a better way.

    I saw it as 'quick reminder' that burning the candle at both ends, can not go on indefinitely.

    I worked in the health service, ? and returned to work in 6 weeks, if I remember correctly. Personally I felt this was too soon, I still hadn't come to term's with the 'fear' of this happening again. But then again, it was really through returning to 'normal' that I accepted what had happened, and moved on, and was able to push it into the background and get on with life again.

    Your recovery time scale is personal to you, a lot of factors are involved here, including, being a bi-laterall, state of health, age, other conditions etc..

    Do what the good Doctors say, the re-hydration should be reducing soon.

    The trek to get your DNR checked should be reducing soon, as your body get's attuned to what dose you need.

    Even the possibility of removing Warfarin will be on the horizon before long.

    At a month, you have got through the worst bit. Give yourself a Gold star, a pat on the back, Your positive outlook will get you there sooooo much sooner.

    The best advice I can give? --forget it - move on with life. Get the most out of every day.

    Linda - a survivor.

  • Thank you Tuttifruity for your positive feedback, and yes I shall award myself a gold star. At the moment I still find my life dominated by this diagnosis, and the fear, but the trips to the clinic have reduced from daily to a 2 week appointment. Friends and family have been a great support and inspiration to me. Today I have walked my dog (only a short distance) and I am going out with a group of friends for lunch, small things which make me feel I am improving. Like you I aim to be a survivor as there is still so much to do out there.

  • I think you have to educate yourself about P.E. & more importantly the medication you're on. I find 21 months on (still on Warfarin) I'm still learning to a degree about what to eat/drink to keep my INR stable.

    As I've said elsewhere on this site (somewhere) I think the P.E. diagnosis for me was a bit of a wake up call to be a bit more pro-active with regards being more healthy. I certainly exercise more & push myself generally. My moral is to get on with life don't allow the diagnosis & medications to ruin yer life. Warfarin I do find can throw odd side effects at you you just have to be aware that X or Y is probably the medication.

    At the end of the day none of us know what's round the corner & you have to live your life to the utmost.Bit of a cliche I guess, but many don't & they're the 'well ones'.

  • Hi buchanloon

    Thanks for replying. It is now 19 weeks since my PE, and life has pretty much returned to normal (except for the Warfarin). I have had my ups and downs with my INR but have been in range for the last few weeks. I hope to come off Warfarin soon (6 months), which I believe is routine for a primary event. But I will have to wait for that decision at my 6 month check up. You say you have been on it for 21 months, was yours a primary or secondary embolism?. My original panic at not being able to swim, walk and generally keep fit has abated, as things have slowly returned to normality, and I am out there enjoying life again. Life somehow seems more intense, when you have been very poorly and recovered.

  • Yeah started on the Warfarin eh....mid April 2011. Apart from a month I was 'clean' been on it ever since.

    Have only had the one P.E. 'event' as you call it, though I think it was more a serious of events leading to diagnosis, as I was in early 2011 getting steadily more ill etc, but I just pushed myself to walk to/from the bus go to classes etc etc.

    Since then though I've gone back to working, I cycle,walk a lot it's not really stopped my life. I just find I have to push myself as I feel more alive going out biking etc.I think it's important to exercise though, you just have to be aware & careful. I know others on this site seem to be suffering ongoing with their conditions, I guess I should be gratetful, but I think surviving a P.E. is if not momentous it's major because it can go one of two ways, one good one dead as it were.

    Warfarin & my INR is still at times problematic with me, over the festive period I ate/drank what I wanted inc all the veges I love but sadly are high in vit. K. As a result my INR was low, but the RAT prog just adjusts it. I don't wrap myself in cotton wool though,my biggest loss though is avoiding biking as in motorbiking.Before Warfarin etc a crash was not a major worry, now it would be potentially fatal ;-(

  • Did it ever go away?

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