In bike forum because it’s my riding I’m worried about – mods move if necessary.

Was diagnosed with Pulmonary Embolism (blood clots in the lungs) on Wednesday this week. Come totally out of the blue – Generally above average fitness, active 44 year old male. Easter time I ran a pb half marathon, been mountain biking over a quarter of a century and with the running too have recently been and felt fitter than ever. A couple of weeks ago I started to notice a drop in pace and that even the smallest hills were leaving me out of breath, put it down to a virus or something but last weekend I went for a little pootle around the woods on my bike and just felt I had no lung capacity. Went to the docs (for the first time since 2009 she informed me!) she sent me straight to the hospital for tests and scans and there we go. A potentially life threatening serious condition (in the words of the consultant).

Any way – anyone here had this? What was the recovery time? How did you keep fit while recovering? How did you get on with the drugs? (xarelto they’ve given me)
Most importantly how long before you were back out riding?

I can’t help with recovery info but a worrying time for you and I hope you’re back on a bike and fully healed soon.

A potentially life threatening serious condition (in the words of the consultant)

Don’t panic. It’s true in general terms – the potential exists. Were they saying that your existing PE was big enough to do this, or that the possibility of new PE from the existing clot or a new one could be ?

Docs may well be interested to know why a clot developed in the first place, as that’s the key event – after that the PE is just plumbing

PE is “just” a blood clot that breaks off from its starting point and wanders along your blood vessels until it gets stuck (if they’re from the veins in limbs etc – legs usually, first narrow bit they find will be the lung, just from the way the circulation goes)

Best advice would come from a doc who knows your case – esp about how soon to start “proper” exercise

I’ve not taken anticoagulants but the general point is that, err, they affect coagulation 😳 so cuts, bruises may bleed more than expected, possibly dangerously so.
Shouldn’t stop you exercising but I’d go easy on the BMX jumps while you’re on it (often “only” 3 months if this is yr first PE and they find no obvious cause)

I assume you’ve read the leaflet that comes with your tabs? If not, look here

If you want more, there is a “professionals'” version called a summary of product characteristics on the same site but it has lots of info you won’t really need and may struggle with, depending on your background

Thanks wwaswas 🙂

Scaredypants – you seem to know your stuff. They didn’t really seem interested as to why it had occurred and put it down to a spontaneous event. Thinking about it since I did come off my bike in February and hurt my wrist, it’s still a bit sore now actually. A few weeks ago I had another off and landed hard flat on my ass, there was no bruising but that hurt alot and the left cheek still has a tender spot now if I sit on a hard chair for a long time. I didn’t mention either injury as I had just put them down to the normal bumps and scrapes you get mountain biking, of which I’ve had countless others over the years. Do you reckon it’s worth getting it checked out in case either of these niggles is the source of the clot?
And thanks for your link, I have read the leaflet but there is more useful info there – ta.

One of my mates suffered one on the side of Cairngorm last September – very scary moment as we didn’t have a clue what was going on (suspected heart attack). Got him rescued (massive thanks to MR) and shipped off to Inverness where he spent a couple of days zipping around the corridors in his wheelchair (back to his normal self almost immediately). He was off the bike for a while, but is back on it now, though he has been in for further treatment a few times back in Manchester. Like you, he was pretty fit.

I’ll try and get him to come on here and have a chat.

The GF spent a week in hospital on oxygen/heparin with a bilateral PE last August, followed by six months of warfarin (and the head-bashing avoidance that entails).

The docs were not worried about her going back out cycling as long as she wasn’t going to fall over – so road riding, but no MTB.

She was pretty weak coming out of hospital, and it took a while to get fitness back – but it came back gradual and steadily, and she feels fitter now than she was pre-PE. It had likely been building for some time.

She’s been given the all-clear now after a number of tests, and is back to all the stuff she was before.

Give me a shout if you want to know more – she’d be happy to help!

I have had 2 that resulted in ambulance trips and a week in hospital. Both happened shortly after long haul flights. Turns out I have a hereditary blood clotting problem, so now I can guess why so many in the family died relatively young.

I’m not used to feeling unwell, so I wasn’t looking for medical reasons for my unfitness.

With the first I was just feeling unfit and progressively losing puff.

I put that down to not doing enough riding so I upped the schedule and rode more hills – gradually getting slower and slower. That still didn’t alert me to a problem, figured it was age catching up.

Things were feeling dire, and I thought maybe a good long ride would fix it. So I rode the Bealach Mhor sportive on my singlespeed. By keeping the level of effort down I managed to make it round, but it was tough!

I had been getting dizzy spells, and slowly subsiding to the ground, but had been ignoring them. About a week after the Bealach I was in hospital. Apparently I was pretty well blocked up on both lungs.

What was amazing (to me) was how effective the heparin and oxygen were in making me feel better. I was on warfarin after that for about 6 months. The docs weren’t too worried about me riding mtb, just warned against a heavy fall and protecting my head.

The next episode was more obvious. I went from ok to not ok in a very short time, and it was accompanied by severe stabbing pains when I breathed. (The previous episode was painless.) However I still put off doing anything about it because I thought I had just pulled a muscle lifting some heavy boxes. Cue another ride in the ambulance and another week in hospital.

Now I’m on Xarelto, bleed like a pig and my pee smells rank. 🙂

After effects? I don’t think I have ever really fully recovered, but age may have something to do with that.

I’m finding 24 hour events fairly tax me now, but a tendency to exhaustion and suffering from the cold are side effects of blood thinners, I believe, so we can take pleasure in thinking we’re so awesome that we have to take drugs with the opposite effect to those used by Lance Armstrong. 🙂

Good luck.

Scaredypants – you seem to know your stuff.

Hmmm 😉
Sorry, should’ve said at the time (was in a rush to get to a meeting) I’m not a doc (am hospital pharmacist).

I doubt that your sore arse is directly relevant – the clot is much more likely in your leg (knee-ish) (Surprised they haven’t told you where though; I’m pretty much certain they’ll have looked)

They didn’t really seem interested as to why it had occurred and put it down to a spontaneous event

Guessing they’d done a test or two by then.
Were you laid up in bed when you were injured ? Being immobile – even like on a long flight – is a risk factor (there are others that they’ll heve looked/asked for too, smoking for example, but spontaneous/unexplained is also possible)

Thanks all – this is a heartwarming place at times. I appreciate your positive stories. Like you epicyclo I’m not used to ill health so this has been a bit of a head spinner. The Doctor said it was bilateral multiple PE but they only kept me in overnight and was only on oxygen for a little while so maybe I’ve been lucky and caught it early or not got it as bad as some of you/friends/girlfriend.
Looks like a good recovery is possible if you’re all out riding again – even doing 24 hour events. Good on you – I think you’ll find a 24 hour is supposed to be somewhat taxing whatever your medical history 😯

Thanks again guys feeling alot more positive now. 😀

I had a post surgery PE back in the 70’s, scared me stupid, I could barely breathe. Soon recovered though.

Glad you’re feeling more positive 🙂

Yeah I was unlucky enough to have an embolism while riding up avimore… Thought I was having a stitch for the first 10 mins then bang I hit the deck without any notice, remembering only trying to crawl to my bike. Until my mates rocked up and events followed they did what they did to ultimately save my life.
I was lucky as I was near Inverness hospital that had a unit dedicated to what was going wrong with me.
They filled me with anti clotting agents for 24hrs and I was up and about 2 days later dicking about on starva around the 6th floor in the ward unit.
It’s affected me in a way that I’ve now got a heart condition ventricular tachycardia which is a bit of a bumber but I’m due an ablation procedure to fix it.
I was only off me bike for a month after the first problem and it took a while to get bike fit! I don’t think I’ll ever get to my post embolism fitness but still working at it.

stevegibb5’s post reminds me – I forgot to say something.

The National Health Service is absolutely brilliant.

Support it.

Don’t believe the negative bullshit served up by media owned by non-dom billionaires who want it privatised so they can get their greasy mitts on it. Chipping away every day with another negative story.

Suffered a PE 14 years ago, at 40. Woke up with a dull ache high up in my back between my shoulder blades which got progressively worse as the morning went on. By 11 I could bearly move. Mrs got me in the car and off to A&E where it was diagnosed as inflammation of the lung linings. Overnight stay, painkillers and sent home. Following day I ended up over the kitchen sink coughing up semi coagulated clots of blood. To say it was alarming is an understatement. Mrs hysterical etc. Ambulance to hospital and 10 days of various tests etc. but never found the source. Now on Warfarin (INR target 2.5) indefinitely. Asked consultant, politely, about the misdiagnosis and being sent home initially and was told I should ask Alan Milburn (then SS for Health) why. Yes, really. When I asked for an explanation for this response I was told that MRI scanners weren’t routinely available. Refused to answer when I then asked what time I should expect Mr Milburn to do his ward round…….. Arrogant prick.

Phew, got that of my chest. See what I did there?

I was in excellent shape for my age, running 40 to 50 miles a week, having been a good club standard cross-country runner in my twenties. Mountain biking a couple of times a week to take the pressure of my joints. After my discharge from hospital it was back to my usual regime, although I was conscious that a big off was not going to be a good idea given the Warfarin. After a couple of months fitness was back to previous levels. Stick to xc trail riding, but still put as much effort in as I can as a 55 year old. Still running 4 or 5 days a week, around 30-35 miles, tho age is obviously slowing me down. My experience is that I don’t feel it has limited my exercise since, just the natural decline that comes with ageing!

PE covers a pretty big spectrum of disease from small clots that can go unnoticed to big ones that stop your heart. So I guess from what you’ve said that you’re at the milder end of that spectrum. If course it’s still an awful thing to happen. We try and classify PEs as provoked (immobility, recent surgery, active cancer, clotting problems etc) or unprovoked and the treatment will be tailored to that. It doesn’t sound like your previous injuries are related. For most people with unprovoked PE, the lifetime risk of another PE is probably higher that the risk of taking lifelong anticoagulants (Rivaroxaban in your case) so it’ll generally be recommended that you continue them. That said, I’m sure there are nuances to your case so I would take advice from your medical team. For most people, anticoagulants are an inconvenience but unlikely to cause major issues, even for a mountain biker, but that’s a risk you can discuss at the follow up appointment.

There was a pro DHer from the 90s whose name escapes me (Dave someone iirc) who was on warfarin for a metallic valve replacement – usually this would be a higher dose than for a PE too. Anyway, he managed OK I believe, apparently ignoring advice not to race…

Good luck with the rehab and getting back on the bike.
I am a doctor but I’m not your doctor so this doesn’t constitute any advice.