Hi combined might of UKC - looking for anyone with experience of the recovery from a pulmonary embolism with recommendations for general advice or contacts for specialists, physios or anyone who deals with this sort of thing.
Also personal experience of timescale for recovery or that sort of thing...
Thanks in advance for advice or help...
There are lots of good Facebook support groups for PE / DVT. A few I have found useful are: Blood Clot Recovery Network, Thrombosis UK and finally Embolism To Exercise is a small UK-based group which I have found pretty supportive.
I had a very large DVT and PE about a year ago. In terms of recovery, everyone is different, and there is huge variation, but in general, be thinking months or even a year or more or more depending on how extensive your PE was.
Also, your treatment plan generally will depend on the cause of your blood clot. If it was 'provoked' (eg by a hospital admission / surgery, long haul flight, pregnancy or childbirth, Covid), you are much more likely to be able to come off anticoagulants than if it was 'unprovoked'. If unprovoked, typically you will see a haematologist who will try and find a cause (eg genetic or acquired pre-disposition).
Personally I have made a reasonable but not complete recovery. I felt significantly better after maybe 4 weeks (able to walk a few miles), and have improved further over the last year, and am living a pretty normal life despite still being on anti-coagulants. I still have a blocked iliac vein (which won't clear) and as a result find it hard to run for more than a few km, and have low level leg pain from post-thrombotic syndrome. My breathing seems mostly OK and it feels like most of my limitations going forward are due to my leg. Things are not perfect but could be an awful lot worse !
Most people do make a complete recovery however, and I was told to walk as much as possible as soon as I left hospital, and once you are cleared by your doctors, exercise is really good for recovery. Just 'listen to your body'; I took this to mean ease off if you get chest pain or dizziness (which I didn't fortunately). You just need to take care not to risk banging your head (eg by contact sports) whilst on anti-coagulants. I must admit I haven't gone back to climbing / bouldering; I walk, jog, cycle, paddle-board etc and I think careful climbing / bouldering would be Ok. I know people who do climb on maintenance doses of anti-coagulants .... I just haven't risked it personally.
Finally, don't underestimate the emotional effect of having a blood-clot. It is perfectly understandable to be either very anxious or depressed after such a serious medical event, and worth seeking help if you do find feelings of anxiety etc don't ease.
Wishing you all the best with your recovery.
Replying so this goes in my threads. I have experience of one and will reply properly tomorrow from the PC.
I developed serious breathlessness back in March this year which I thought was Covid, but was actually diagnosed as Pulmonary Embolism. I was in hospital on oxygen and anticoagulant injections for a week. The clots in the lungs were eventually dissolved, and I now take 2x5mg Apixaban as a blood-thinning maintenance dose (probably for the foreseeable). Apixaban is the modern equivalent of Warfarin.
I'm back to near normal, though still a little breathless from time to time. No physio was offered, but I was told to keep up the exercise. At the moment, cycling seems better for me than walking the hills as far as that is concerned. I reckon I'll be back walking the hills this winter or spring 2022, so I would say a year to fully recover from PE.
Great advice from janeh. I can't really add more to that, except that I wish you a full recovery.
Too late to edit now, but I thought we had had a thread on this quite recently and indeed we did, I put a load of my thoughts on how it was for me in there:
To be honest, a year and a bit on, the main thing that is still affecting me is the weight I piled on due to being inactive during initial recovery. I seem to be able to hoik myself up mountains better in this fattened state than I could before, which does make me wonder how long it was going on for before I had it diagnosed (see the above thread for more thoughts on that).
And warfarin, should you end up on that as I did (rivaroxaban didn't work on me, I reclotted), is not anything like the faff it is cracked up to be. I am maintaining a very steady INR with almost no dietary faff, still drinking alcohol etc. Main impact for me other than a visibly swollen right calf (post thrombotic syndrome) and it getting a bit achey when sat down for a while (motivation for a lunchtime walk!) is increased helmet wearing to offset the risk of concussion which could be more serious due to the bleed risk. Not returned to climbing yet but that is purely because of the weight issue (combined with an iffy back) - were it not for that I'd be back at the wall tomorrow.
Be careful with support forums, I find they tend to be more depressing than helpful in many cases (same for the coeliac ones) and populated with the overcautious. Of course your risk assessment on things with head injury risk is your own, but if wanting advice I'd take it from a doctor rather than support forums like those. To sort of counter them "being diagnosed with PE has not changed my life" (but has provided an answer to some ongoing problems)
janeh's reply is really excellent, and there's plenty of good information on this thread (and the last one, at least until I distracted us by talking about asthma!).
By far the most common cause of breathlessness after the initial (few weeks) phase is deconditioning (i.e. becoming less fit). The advice re exercise is not just wise, but vital for a quick recovery.
Depending on your age the question about seeing a blood specialist may be tricky, as beyond the age of about 40 those tests for genetic causes of stickier blood are not overly helpful and may not alter the long term plans at all. The genes are found quite frequently in people without clots, and some of the effects we attribute to them are found commonly with age in normal people without clots. I rarely take the testing further unless you re a young woman not on the contraceptive pill from a family where everyone gets a clot in their early adulthood, and judging by your profile that's unlikely!
There's no routine specialist monitoring required, as the body clears the lung clots well - within days to weeks, to a small number of months - in 99% plus. It's usually fair to say e.g. if the clot came from a leg then that leg might not be quite such a prize-winning body part in the future, but long term effects on heart/lungs are extremely rare. They are usually also fairly obvious if they do occur, and can be treated. But that's extremely unlikely.
The "post-PE panic syndrome" has been described and there's an increasing recognition that the psychological effects can be more challenging than the physical ones over time, as the physical ones ease quickly but some people do have more troubling anxiety - which again can usually be addressed effectively if it becomes an issue. Getting back on with life and forgetting about it remains the best bet.
Wishing you a speedy recovery
For what it's worth I can definitely tell the difference between shortness of breath from PE, which for me was more like actual hypoxia*, with fast, "runaway" breathing almost like an asthma attack but with however much salbutamol you chucked in making no difference to it and recovery taking quite a while, plus a bit of light headedness, whereas shortness of breath from lost fitness/weight gain is just more like what most people would understand as being out of breath from being fat and unfit, i.e. breathing heavily but if you stop for a rest you recover reasonably quickly.
Would be interested to know if it felt the same to others, but I certainly pretty much knew when the PEs had got small enough not to be having any effect any more.
* Actually not hypoxia but increased blood CO2 I think?
Yeah. I dunno. For me it just felt like I was first a bit unfit whilst running, and then just before I got diagnosed, very unfit whilst running! I still feel not great running TBH, but can't really tell how much of that is due to the lack of blood flow in my leg making my heart work harder (and my leg tight) or whether there is (still) a problem with my heart or lungs. I have had various checks done (heart echo and a lung function test), and haven't heard back anything negative (or indeed anything at all!) and my running does seem to be very slowly getting better, so I just keep plodding on ....
Never felt lightheaded or any real SOB that I remember.
If your leg is still very tight I would go back. When mine reclotted the calf went rock hard, now it has been treated properly it is still swollen (and still gets more swollen in certain cases) but mostly doesn't go rock hard like it did then.
It may be that your anticoagulant didn't work properly (some people tolerate them too well - even on warfarin I take a very high dose for it to work - 3x10 and 4x9 a week, which is the highest my nurse has seen) and they need to try a different one, as happened to me. They tried to convince me it was post thrombotic syndrome, but it definitely wasn't - that is what I have now and it is different - swollen, but nowhere near as tight.
That said I think you mentioned a permanently blocked proximal vein, which I don't think I have, which may mean a different situation.
There are a number of reasons why PEs make people feel breathless, and the amount each one contributes varies from one person to the next. From a climber's point of view, I suspect the main one is best likened to being at altitude: you have to breathe harder to get the same amount of oxygen in to your bloodstream. This means, just like at altitude, the CO2 levels drop as you are having to overbreathe (with good reason - to keep a normal oxygen level). This tends to cause some dizziness and light-headedness. There can also be effects on the right side of the heart, and pain can be a feature especially if the clots are relatively small and have travelled closer to the surface of the lungs, where there are some pain receptors.
DVTs don't tend to cause issues with the blood supply (being venous rather than arterial) but the return of blood from the limb may not be quite as good afterwards - easier to think of the fluid being stuck in the limb not wanting to return - as good a description of post-thrombotic syndrome as any probably! Compression stockings reduce the build up and reduce swelling. A new DVT would usually make the leg bigger, redder and more sore compared to post-thrombotic syndrome.
Many moons ago when I worked at Raigmore I looked after someone on 20mg of warfarin a day (!) while the guy in the bed next door alternated 0.5/1mg daily. It's a funny old drug. But usually people get into a groove with it unless there's something else going on and it's all we had until recently, so plenty of experience out there. Good to hear you are settling down well!
> There are a number of reasons why PEs make people feel breathless, and the amount each one contributes varies from one person to the next. From a climber's point of view, I suspect the main one is best likened to being at altitude: you have to breathe harder to get the same amount of oxygen in to your bloodstream. This means, just like at altitude, the CO2 levels drop as you are having to overbreathe (with good reason - to keep a normal oxygen level). This tends to cause some dizziness and light-headedness.
That is I think what happened - and I did come up with high haematocrit (red blood cell count) on blood tests, which dropped off following treatment, sort of confirming it - in essence I had altitude trained without being at altitude. The other thing that had happened (which is what actually caused me to be admitted to hospital for a few days which they said they wouldn't normally do for an otherwise uncomplicated PE in a 41 year old) was that my normally very low resting heart rate had gone much higher - 80ish rather than my usual low 50s - and my blood pressure right up to 180 over something (forget the something, but the 180 was enough to give them concern about potential stroke when combined with an anticoagulant). Again a few days of heparin injections very quickly brought all that back down to the point that I was being woken up near enough hourly by the monitors alarming as my heart rate did its more normal thing and dropped below 50 overnight.
I was also fiddling with a finger oxygen meter thing, and that showed it dropping to 92-93 when I started getting short of breath or a bit light headed, whereas normally with me it is much more stable around 97 ish. That isn't super-low but is clearly enough to make a difference in me I guess.
Thank you so much for the detailed reply I'll check out those groups. Sorry for the slow response my computer was at the menders...
Thanks for the response. How far are you cycling and are you keeping an eye on your heartrate?
Thanks a lot for the reply and I'll check out the other thread now!!
I choose cycling routes that aren't too hilly - which hereabouts is a bit difficult - or take the hills much more slowly than I would have done before I had PE. I can do 25-30 miles at a gentle pace.
If I feel that my heart is working too hard on the hills, I get off and walk. There's no shame in that, given what our respiratory systems have been through.
I don't yet have a heart rate monitor, but I think it would be a good idea to get one. For a 68 yr old like me, I aim to not go above a maximum bpm of (estimated) 120, given that oxygen absorption still feels somewhat compromised. I'm sure this will improve over time, and with gently increasing levels of exercise.
Thanks for this and the other post, really useful info....
Ok thanks, I started doing about an hour and a bit and always at below 130bpm - I'm 54 and this would be Zone 2 for me so pretty gentle. So probably pretty similar to you. And been 'grandad-gearing' the hills as well...with a nice 32 on the back...
Cheers hope you keep improving...
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