week 8 - recovering from PE and DVT

So, where to start. Not long after my last post, I ended up in hospital with a pulmonary embolism, caused by a DVT in my injured leg.
I’m feeling much better now - angry that this could happen but it just confirms my feelings about my particular NHS care.
Back to the fracture clinic tomorrow for my 3rd visit, with absolutely no idea what they have in mind for me, but I’m not holding my breath with anticipation of an improvement in the service.

12 Responses to “week 8 - recovering from PE and DVT”

  1. Good luck! Those nasty clots are much rarer among the non-op crowd than the post-op patients, but they’re always possible with a big trauma and massive healing. Some docs prescribe Heparin shots to avoid clotting, but that’s rare. Very few patients get these particular complications, but if you’re one of those few, that’s obviously little help.

    What is clear from the non-op evidence is that the results are essentially identical to post-op IF you go with a fast modern protocol. The results from old slow “conservative casting” are quite inferior, especially in much higher rerupture rates. So don’t let them lead you down the slow path!

  2. I’m sorry that you have had to deal with a clot. I didn’t even know it was possible without surgery (shows how much I know!) How long has it set you back? Are you weight bearing at this point? Hope that your appointment goes well tomorrow. Good luck!

  3. Hi Pam, Sorry to hear that you had a PE, it must have been a scary experience and feels so unfair after also having a ruptured achilles. I was also no op on the NHS and I was assessed fro my thrombosis risk, as in I was asked questions like was there any family history ofDVT or PE, have I had any clotting disorders, did I smoke, any significant varicose veins, age (50 not a risk apparently) and they assessed me as not at risk, so I did not get offered any blood thinning injections. It didn’t stop me being paranoid about getting a DVT though, but I was fortunate. Do you think you were assessed? Would it be worth finding out at your next appointment to set your mind at rest that nothing else could have been done? None of us can turn back the clock, but sometimes knowing that it was just bad luck can help to deal with it. best of luck Pam .

  4. Hi Micah et al,
    thanks for your kind words. It was very scarey and although I was aware a DVT was a risk (from my own research), I stupidly put my trust in professionals, thinking that if they didn’t think it (I) was a risk because there was no mention of it, then it must be ok, particularly as I was non-op, not overweight, don’t and never have smoked, not on any medication, etc. I considered all other possible options before I finally decided I was out of them and it was time to got to the hospital.

    I have had NO assessment other than the Thompson test for the ATR. I was left sitting with my leg hanging off a wheelchair for at least an hour before it was put in plaster, given a pair of crutches, told no weight bearing, and shown the door. No questions about my life style, varicose veins (I have none that I know of) or family history. No warning or advice on what to look out for. Perhaps a low dose aspirin daily and a leaflet describing the symptoms to watch for would have been a good idea.

    As far as the doctors in the cardiac unit were concerned, it was totally caused by the fact I wasn’t moving that part of my leg. But, in my experience, you won’t get anyone admitting anything might have been preventable, in the NHS, if they ‘forgot’ to do something. The best way to tell, is how well you are treated after the fact. The consultant I saw today - the first time I’ve ever seen one for this injury, was very helpful - who knows, maybe he’s like that all the time.
    While I was in the cardiac unit, I asked 2 different doctors for someone to visit from the orthopedic dept, to examine my leg and see if I could start physio. The 2nd doctor told me he’d ask, but it was unlikely to happen! He was right - this is the same hospital btw.

    By week 5 I had decided to PWB, against the nurse’s instructions and then when I was hospitalised, I intensified my homemade ‘physio’. I’ve not yet seen a physiotherapist, so I’m really making my movements up myself, which is scarey. Interestingly, the consultant had nothing to say about the fact that have I ignored their advice for the last 2/3 weeks and was pleased with the strength in my tendon. A small comfort! He said to continue to WB and try to bear footed too.

    To add insult to my injuries (lol!), today I journeyed for 50 minutes (x2) to my 3rd appointment (including the original A&E admission), to what I thought was going to include some physio (it was mentioned at the last appointment - week 4), only to find that the physiotherapist was on holiday. A complete waste of my time tbh and fuel. I now await a phone call - excuse me if I don’t hold my breath - need all the oxygen I can get atm :-D

    So I’m left a bit high and dry, again. I try not to be bitter, it’s not healthy and doesn’t change anything, but boy I’d like to be back at my boxercise class (that got me here in the first place!) as I feel a round of punching would feel so good right now!

  5. Sorry to hear about your clot. Did you have any symptoms? If so, what were they?

    Good luck, feel better. xx

  6. Hi Superjewgrl

    Yes, sorry, that would have been most useful for me to have described the symptoms. My brain hasn’t recovered!

    So about a week before I went into hospital (week 5), I had a “funny turn” where I got up from lying down (trying to tune a remote to a TV in our motorhome - which I never did!) and I felt really breathless and had a slight irritation in my chest - like I wanted to cough, but mostly it was just irritating. I sat down and started to feel really lightheaded as if I was going to pass out - hearing and sight felt weird and I felt hot and uncomfortable, etc. My husband was with me and said I went very pale.

    I put it down to low blood sugar or postural hypotension - getting up suddenly, you know and age, etc. But I felt ok after a night’s sleep. Little did I realise that what I’d experienced was my first pulmonary embolism!

    As far as the DVT goes, I had had some aches, but none in my calf and they nothing unbearable. I put it down to lack of use of that leg. The worst ache I had was at the back of my knee and above, after travelling in the car for about 30 minutes (the day of my son’s graduation, which I’m so happy I made!)). I put it down to sitting for a while and then having to crutch a distance holding my leg up (was still NWB at that stage). It really felt like it just needed a good stretch. Not in agony and it went away.

    A week later, 2 days after crutching around for miles at my son’s graduation, we were setting off for a weekend away to get me out. That morning I experienced the same “cough/irritation” sensation and breathlessness going up and down the stairs. I did wonder but put it down to getting less and less fit!

    Later that day I couldn’t be vertical without a sensation of light-headedness and waves of “panic” in my chest. I was fine if I stayed horizontal, but the minute I tried to sit up wave after wave of this feeling of passing-out came over me. My husband said again I was white at these times.

    If I tried to crutch anywhere (and I did!) I was so breathless. I was still trying to put it down to a bug but kind of thinking it was something more serious - actually there had been reports of Legionnaires disease locally, so I was considering whether that was a possibility!

    When I got to the stage where crutching 10 feet, or turning over in bed left me gasping for breath and in tears, I figured this was no bug and that nag in the back of my mind about pulmonary embolism was a serious contender. The fact I’d hadn’t had what I’d have thought were “typical” DVT symptoms was the reason I didn’t believe it right away.

    However, my leg was swollen - I hadn’t noticed, just thought that it hadn’t withered as much as I thought it would! When I got to hospital they measured it and it was 2cm bigger that my other leg - and of course it should have been about 1cm thinner, so it was pretty swollen at that point. How long it had been swollen I don’t know - it was up and down over the weeks and I put it down to not having been able to keep it raised.

    I know it sounds crazy now that both myself and my husband didn’t suspect something serious right away - but we didn’t - it just doesn’t happen to me!! Actually, I’ll share with you that at one point I suspected I was experiencing hot flushes (flashes) - until my husband said I was going white, not red, lol - that was a relief! Basically, I was happy to suspect any minor reason first - even that I might be having panic attacks as the symptoms fit.

    So yeah, I sound like a complete idiot; didn’t think I was but maybe I am actually :-D This has been a huge learning experience one way or another from rupture to now and it’s still not over!

    I’m feeling much better now - I was in a lot of pain from my lungs for a few days - excruciating actually. I’m on anti-coags for 6 months (not warfarin, so no clotting tests). Holiday to Malaysia has been postponed until February - one less thing to stress about being fit for!

  7. Wow! I know exactly what you mean when you say “it just doesn’t happen to me”. I’m glad this is behind you. How scary.

    There is someone else on this site who developed 3 clots. 1 behind his knee and 2 in his lungs.

    Take Care of yourself. I hope it’s smooth sailing from here. xx

  8. I don’t blame you for being slow to treat it seriously, and I’m impressed that you basically got the diagnosis right!

    Are you doing daily Heparin shots, or what?

    I forget exactly how much lower the frequency of DVT was, non-op than post-op, in the latest meta-study. I recall that it was very significantly less frequent, but when it happens to you, that’s cold comfort. (Mathematicians will tell you that when the event either DOES or DOES NOT happen, “the probability function collapses”, from whatever the risk was in advance, to 0 or 100%. Great!)

  9. I was on heparin injected into my stomach (ouch) in hospital but now I’m on a newly licensed drug (in the UK at least) called Rivaroxaban (Xarelto, elsewhere). It’s only licensed for short term use here, which is fine for me as I’ve only to be on it for 6 months.
    15mg twice daily for 21 days and then 20mg once a day for the remainder.
    The benefit of this drug over Warfarin is that I don’t have to have the frequent clotting-time tests to adjust the drug level. It is more expensive than the rat poison option of course, but I think I deserve it ;-)

  10. Pam, because of my OTHER online fetish — heart health, since I had a heart valve replaced — I get notices of lots of articles on trials for Rivaroxaban and other Warfarin alternatives. But I generally don’t read them — and none of them is about using them to prevent DVT after ATRs, either!

  11. No, I’m guessing they wouldn’t use it over here as a preventative for ATR even if it was effective because of the cost to the NHS. In my case it’s being used as an anti-coagulant, but I know that it can be used for prevention of strokes caused by clots in atrial fibrillation. However, my mum is a sufferer of AF and she wasn’t offered it, but instead put on Warfarin, so not sure who would be prescribed it for this condition.
    Good old low-dose aspirin might have been a reasonable preventative in my case I guess.

  12. Aspirin works in a very different way than the so-called “blood thinners”, and the two groups don’t necessarily prevent or minimize or break up the same clots. I know only enough about it to know that it’s not simple.
    It’s pretty remarkable how well Warfarin works in huge groups of heart patients who are at risk of clots — ESPECIALLY when it’s combined with home- or self-monitoring for blood (”INR”) levels.

    All the studies show WAY better outcomes with self-monitoring, vs. the standard periodic visits to a clinic (with arbitrary nuisance visit schedule and delayed reporting). And self-monitoring ends up costing the system much less than the clinics and labs — but it runs afoul of an entrenched establishment, and it’s not the way today’s doctors were trained. (Sound familiar?)

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