Bilateral PE's in early 2010, less than 2 years after starting in triathlon. Unprovoked, no contributing factors found, so 6 months (or maybe it was a year, I forget) of rat poison. I've since done a bunch of races including two 140.6's (albeit with the same less-than-stellar performance as before the PE's!) but no recurrences. Every so often, rib-area muscle soreness gives me a little bit of concern but staying hydrated, using compression after long rides/runs and being conscious of sitting for too long at work/on flights etc have worked so far.

Bilateral PE post surgery about 6 years ago. Did the rat poison (Coumadin) route for about 6 months. No previous history and idiopathic in nature. However, I didn't have to be on medication long term after the PE resolved. My pulmonary doc actually encouraged me to do aerobic / endurance events once I'd been off the Coumadin for 3 months. But everyone's situation is unique and IANAD and I didn't stay at a holiday inn express. I'd ask why he or she thinks it's a bad idea and go from there. A second opinion rarely hurts.

I know a guy who had PE about a year ago and is a 2:20 marathoner. This weekend he is going to do a marathon. I asked him if he thought the PE has affected his running ability he says he thinks not. He hasn't had as much chance to train and figures on going 2:30 about this weekend. This had got me thinking about runners and PEs. Seems an odd thing to happen to a young health person. I wonder if it is more common in endurance athletes.

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They constantly try to escape from the darkness outside and within
Dreaming of systems so perfect that no one will need to be good T.S. Eliot

Sorry to hear it. PE 2009, repeated in 2010 after 6 months on coumadin, so now a lifer.

Since then...
9 70.3s
2 IMs
2 SOS
2 Escape from Alcatraz

etc etc etc

My experience was that most run of the mill docs had no clue about living life after PE and/or on thinners, but I've never heard any cardiologist say no endurance sport simply from having a PE, unless there is some other reason

There's a FB page called running after pulmonary embolism, full of folks running marathons, ultras, etc.

Time for a second opinion

It's very common in endurance athletes, yet ironically few endurance athletes are really aware of it. In my tri world on and offline I know about 10 people that have had them

Thanks for your reply ChrisM
I think the docs are just over cautious as they said there are to many grey areas. I asked them what they were worried about and they said bleeding from a crash and that they can't guarantee 100% protection from another embolism while on xarelato.

Thanks for your reply
Sounds alot like me with the rib area pain that I get now and then.

To the OP: if you're on a blood thinner, you're at a miniscule risk of a repeat PE. But a bike crash is potentially more dangerous, especially if you're on a blood thinner that can't be reversed. Consider scheduling an appointment with a hematologist to get his opinion.

Are you permanently on warfrin on xarelato now?

Yep, there is a risk of potential complications from a crash (or for that matter a car accident, or falling and hitting your head in the shower, and... ). The primary reason I am not on Xarelto. There are at least methods of reversing coumadin. But in the end that is a personal life choice as to how much risk to accept. There is and was always a risk riding our bikes, thinners increase that risk. How much? Who knows. I also self test my INR and self dose to keep my INR as close to 2 as I can. I ride the trainer indoors during the week, avoid large group rides, certain roads, etc.

As to the second, I don't understand. Of course they can't guarantee no second clot on xarelto (or any other med), but fail to see what that has to do with working out.

At any rate, I get it. My wife wanted to wrap me in bubble wrap when it first happened.

Yes. and I meant to add

2015 I had a very bad bike crash, in a race of all places. Caused by another rider who hit a barrier and fell in front of me, I could not avoid it. Severely broken collarbone, 7 broken ribs, punctured lung. I recall hitting my head but never passed out. Week in the hospital, surgery, month off work. It was bad. But the thinners thank goodness did not really affect treatment. I acknowledge the risk, and that it could have been worse. But I had a full workup at UCLA following the PEs, and asked the hematologist about skiing and snowboarding, he said "go live your life, just be careful and wear a helmet."

Yes difficult decisions when you are married and have kids thanks for your input!!

When one is exercising, the heart rate is elevated and I have a hard time believing a clot could develop...unless maybe the person is severely dehydrated, or perhaps a side effect due to something a person might be taking, like a prescription drug or hormone supplement (testosterone).

As far as a half ironman is concerned, I think it's fine to participate...once you get off the blood thinner ( weaned to a small amount). As mentioned above, a bad injury when on a thinner carries a risk, and only your doctor is best to comment on this.

I've done five fulls (slowly) after multi bi-lat PE

Being slow had nothing to do with the PE

I always work a wrist ID in case of accident with meds and contact details

Years later i had a full genetic screen as i worked somewhere where i could get it done. No cause found.

Dehydration is a risk, particularly for long-course racing. And also if you're making a long flight to a destination race, that is also a factor. But once again, the chances of a clot are pretty small while you're still on a blood thinner (probably lower than the general population).

IVC filter is also an option. But it’s not for everyone. Modern ones are retrievable.

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Don't drown. Don't crash. Don't walk.

I had a PE about 6 years ago. No causes ever found. Did the Coumadin thing for 6 months, had all the tests and then all clear. No recurrence and certainly no effect on my running and cycling (Maybe I can blame the PE for me being so slow :))

Editorial.....IF PE is only reason they are suggesting no endurance sports consider getting a new doctor that takes the time understand the individual. I changed my doctor to one that is a fellow endurance athlete (and his practice specializes in endurance athletes) after getting constant advice that was always text book and "cover your ass". I stopped treating Doctors as special and all knowing over 30 years ago. Now I take their advice into consideration and then make MY decision. I don't mean to imply that all Doctors are bad and mean ill will, I simply prefer to make my own decisions. Doctor's are simply mechanics for the human machine (highly trained, valuable and educated for sure) and I treat them as such, actually not much different than the mechanic for my car. End Editorial.

I've two PE's, one in June 2015 and one in July 2016. I was on xarelto for 6 months for the first one, and now I'm on it for life. They told me the first one should have killed me, the second was mild. It's believe it's all travel-related since I travel a lot for work. The return to cycling was much rougher than anyone told me, and I've spoken to a couple of people who say the same thing. Last I had checked, my lungs were working at 93% capacity. My heart rate was all out of sorts for awhile, and didn't match perceived exertion until maybe about a year ago. I have kind of felt like shit since then, but my fitness has been on a steady incline and my power is back around where it was before, but there is something off, and I don't sustain power as well as I used to. One thing that is hard to find info on is that a PE can do a real number on you, decimate your fitness, and I struggled with getting oxygen, so endurance sports sort of sucked. I never drank coffee before the incident, but now drink a lot because I was so tired all the time. I thought there was something really wrong with me, but a lot of people don't understand just how destructive it can be and recovery can take a long time for some. I started triathlon because riding in packs on a blood thinner didn't seem like the best idea, but I have continued to do some road and mtn racing. I haven't noticed real side effects from the xarelto, and my doctor who also does ironman has told me just to take the meds at night, and skip a pill the night before a race, then take it right after. That way if there is an accident, the thinner shouldn't have as much of an impact. I also wrecked on my mtn bike last week and fractured some ribs. I went for X-rays and no internal bleeding or anything like that, so other than wearing a road id dog tag all the time, it hasn't been much of an issue. I don't have any bruising issues and other than a wicked bloody nose every now and then, no bleeding issues. If I cut myself shaving, it usually is nothing. I generally do at least one event per month, and have done 4 70.3s in the last year. Good luck, and if you do have struggles, it does get better. I had times when I felt I'd never be normal again, but I'm back at everything I was before and looking to be better than I was before the PE.

Another PE case who has raced several IMs without any issues. Lifetime on Coumadin, but keep my INR around 1.4 to minimize bleeding risk.

In addition, I think the paranoia about blood thinners and risk is overstated. As one poster here noted, when he crashed, it was the broken ribs etc that really caused the problem. If you show up in hospital with these kinds of injuries, getting the vitamin k shot is quick and easy to prevent internal bleeding. You just need to make sure that your doctor KNOWS you are on warfarin/coumadin. Wrist band?

In addition, instead of xarelto, I stick with coumadin as I got a little dizzy on the xarelto, I can't reverse it immediately, and I can't be sure I can even spell it correctly! :)

I would of course listen to my doctors not ST. I might consider finding another doctor for another assessment and make a decision.

Clot has to do with stasis of flow, endothelial damage and hypercoagulablility. Dehydration doesn't help as flow can get a little more sluggish. There is no "weaning to a small amount" in the treatment of DVT though subtherapeutic coumadin levels offer more protection than no protection. And yes, docs are a cautious bunch. Had an acquaintance who was a internist. Rode MTB and would ride up hills and walk down them. She really liked to ride.

Had a pretty big one according to the ER/hospital I went to at age 30 (1.5 years ago). Hematologist I've been seeing since the incident told me I can be on the medication if I want but if I choose not to be the risk of repeat since it happened when I am so young is crazy high percentage.

I do for sure get nervous about it when I go out riding from time to time. Not going to lie it does cross my mind, but at the same time if I am riding outside, which during the good weather its like twice a week maybe, I tend to have a friend around who knows whats up with me.

I try not to think about it that much, but its not stopping me from getting out there and enjoying the activity.

I have several patients (I'm a board certified cardiologist) who are on AC with warfarin or NOAC (non vitamin K antagonists) and compete and complete various endurance activities, including triathlon. One of my closest friends had recurrent PE while training for the Boston Marathon. He teaches at the UCONN medical school so he was very aware of symptoms, diagnosis and treatment options. Sometimes you cannot predict what will happen to you, but you can learn to live well with what you have.

Pradaxa, has a reversal agent now, with others actively being developed. And the risk of trauma induced bleeding is far great than recurrent DVT/PE on appropriate meds, and they are still all very good meds when chosen appropriately-despite the commercials.

Living the active healthy life is even more important when you have had health issues in the past. Work with your doctor and ask questions..

Have any of you that have had multiple PEs ever been tested for Factor V Leidens?

The reason I'm wondering about that is I see many patients that have a history of PE but end up going off the meds once their lungs are clear. Most report that they never get them again, but recently I know of several people who had multiple occurrences and were finally tested for the Factor V and had it.

I had a PE July of last year, was treated 6 months on Xarelto and had a recurring saphenous vein clot within a couple weeks of stopping treatment. Been treating with Pradaxa since and will continue for a year total, then down to just aspirin therapy. Been seeing a hematologist regularly and we did a full hypercoaguation workup twice and will do so again at the end. Everything has been clear, no risk factors found, even reaching for the bottom of the barrel on testing.

During the whole time I have been riding and racing my bike regularly, though I have a somewhat lower risk tolerance for doing stupid stuff going downhill, on the MTB, or in sprints. Part of that's the meds, part of that is just realizing that those kinds of things just weren't worth it in the first place.