Bilateral Pulmonary Emboli

Oct 20, 13 11:04

Post #1 of 36 (6327 views)

This is my first post and unfortunately, has to do with a scary situation. I was diagnosed 7 weeks ago with BIG bilateral PE's and am now on Xarelto. I have been reading posts about this and wanted to add to the "SlowTwitch PE database." I'm wondering if there is something about the blood of endurance athletes that precludes clotting. I am 44 and have been racing marathons and IM races since 1994. I began having chronic calf strain injuries (mostly in my left) about 6 years ago from running.

While training for IMFL 2013 (and recovering from a particularly bad calf tear sustained during a sprint tri) I crashed my bike and broke my clavicle (still hopeful for IMFL which was in 8 weeks). One week later, after a 4.5 hour car ride, I had severe shortness of breath while doing easy activities (e.g. getting dressed, going up stairs). I went to the ER and the CT showed PEs. They put me in the ICU (so scary), started me on lovanox injections and coumadin (so NO IMFL for me, but you know I asked permission). I was certain the clot came from my arm, but the ICU doc said that clots that large could not be from my UE veins and had to be from my legs (hmmm, calf tear? It never felt or looked DVTish). I had US of both legs and no evidence of clots.

I had a hard time getting "therapeutic" on coumadin and my stomach looked like I had been beaten (from the lovanox injections) so I switched to Xarelto. This is much better since I don't have to get blood drawn and watch what I eat, but there is no way to know if it is really working. I read studies and apparently it works just like Lovanox but in a different part of the clotting cascade. I'm now 7 weeks out and CRAVING endorphins. I actually started walk/jog and some stationary biking a few weeks out. I was feeling better, and tried to teach a group fitness dance class (BIG mistake) which got my HR up way too high and I had a difficult time getting a deep breath for several days after. This is SO HARD!!! So, I promised myself (and my hubby) that I wouldn't do anything "competitive" until summer. I should be off the Xarelto in March and they are going to do a workup to see if I have a clotting disorder. If I had a disorder, I would think that it would show up before now, right?

I don't really have any specific questions but it was good to share this. I know I can't bike outside until I'm off the Xarelto. I signed up for St. Jude half marathon in December, but will be happy if I can just walk/jog the 5K. Please respond if you have any advice or words of wisdom!!!

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 11:45

Post #2 of 36 (6293 views)

I too had a Pulmonary Embolism and know what you are going through. Doctors don't know what caused mine but suspect it was from me sitting on airplanes more than anyone should have to.

There are a number of "us" that frequent ST and am sure others will chime in to this thread.

When I started back, it was very difficult to walk 200 yards without having to rest but I stayed at it and now have no ill effects. I would have to look back at my logs but I think it took me about 3-4 months of starting from scratch. I celebrated by running my first marathon 8 months after. When I started back, my son would ride his bike beside me and he carried a cell phone just in case "dad got in trouble". Took longer for my family to stop being worried then it did me.

Best of luck and best advice I can give is "listen to your body" more than ever while you work your way back, PE is not something too mess around with.

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 12:02

Post #3 of 36 (6278 views)

Your age? If you are older and no previous clots then it's unlikely a clotting disorder.

History of clots in family?

You had three reasons to get a clot...calf tear, clavicle fracture, car trip. So hopefully no clotting disorder.

Xarelto seems great to patients but to ER docs, surgeons, etc its a terrible medication since its not easily reversible like coumadin. It's in the works but not readily available yet. So be careful.

Do you have your CT scan report for us?

6 months is about right for the anticoagulation if everything clears up.

If no more clot, and thrombotic panel is normal you should be done with anticoagulants.

Good luck and hope you feel better soon.

-jack

Disclaimer: no formal advice is given here, just some answers to your questions and reassurance for you.

-----
Fine Line Racing - "this is living"

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 12:23

Post #4 of 36 (6257 views)

I also had a massive DVT and PE last February which was only diagnosed after a full body CT scan as I had done all the other heart tests due to having difficulty breathing etc., unfortunately for me a doctor put in an IVC filter which basically destroyed my life as I once knew it.

Not only did it rupture in the vein but when it removed it tore up my IVC and now I have stenosis of the vena cava, not to get into my issues too deep I suffered 3 more bad PE episodes during this period one actually stopped my heart, thankfully paramedics were able to save me, but I have been on Coumadin since and figure it will be for life even though I don�t have the clotting issues.

Coumadin is a pain having to get regular testing but you might want to find out with the drug you are taking what happens if you were to need immediate surgery as Coumadin can be reversed but others cannot, leading to some issues. Thankfully now my lungs are good even after the 4 PE�s no damage so that is great news, what caused my original DVT it is thought it was an unloader knee brace that was too tight on the vein at the back of my knee. (I had a VQ Profusion scan last week and got the all clear on my lungs)
Today I ride on my bike, swim, gym and a little running but I cannot achieve anywhere near I used to due to the lack of blood return to the heart through the vena cava, but after being fit all my life (I am now 56) it was something I fought back from not being able to walk across the hospital room without being totally fatigued to at least something that resembles being fit and active again.

Hang in there sometimes it can be a long road getting back from this yes you feel like everything is a struggle but you will get there with time, keep your blood thin but do have your blood tested when off blood thinners to make sure you don�t have any factors to make clots. Get a scan in a couple of months and you will be happy I am sure to see your lungs will be clear and good to go. Also get a follow up Venus doppler on your legs make sure the old clots have gone or at least are now attached to the walls of the vein which should not cause any more issues.

One of the doctors I saw at UCLA said that dehydration is a big factor in causing blood clots and he said athletes suffer a lot due to the slow heart rates and dehydration. So sometimes we can�t win for loosing! If you want any further information just send me an e mail, I will be glad to give you what I have learnt during this journey. Cheers LA Rob

Last edited by: hercules: Oct 20, 13 12:26

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 12:38

Post #5 of 36 (6234 views)

SBRjen wrote:

I had a hard time getting "therapeutic" on coumadin and my stomach looked like I had been beaten (from the lovanox injections) so I I should be off the Xarelto in March and they are going to do a workup to see if I have a clotting disorder. If I had a disorder, I would think that it would show up before now, right?

I was 43 when I had a DVT and PE. I had been in a walking boot for 8 weeks, so it was pretty clear to me what the cause was. I had never had any issues before, including many, many intercontinental plane flights. They did the blood work up anyway and turns out I have Factor V Leiden. So it is very possible to have a genetic disorder and not have it be an issue until later in life.

Sounds like you are a good candidate for Xarelto. I am on Coumadin, but am relatively stable in regards to my INR. But definitely heed cyclingdoc's warnings about the drawbacks of Xarelto. Those are the reasons I am sticking with Coumadin for now.

Good luck. FWIW, my Factor V is barely a blip in my lifestyle (other than struggling to remember to take my meds every night!). The ony real change for me was having to give up bike racing, but I just do tri' snow instead.

Chicago Cubs - 2016 WORLD SERIES Champions!!!!

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Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 13:05

Post #6 of 36 (6215 views)

Hi SBRjen, hope you a fast recovery...I'm an ER doc and I'd just like to echo what the other doc posted: be very careful....all of the newer anticoagulants (i.e. newer than coumadin) are essentially non reversible. In other words, if you come in after a bike crash all I can do is watch you bleed (think head injury...) That's a bit of an exaggeration but not much...

take care and get back at it as soon as it's safe

Re: Bilateral Pulmonary Emboli [cyclingdoc] [ In reply to ]

Oct 20, 13 13:17

Post #7 of 36 (6202 views)

Xarelto actually clears very quickly, we just stop it the day before surgery (like lovenox) and it's out of the system. In some ways easier to work with than coumadin (from a surgical point of view), even if you try to reverse the coumadin before surgery it still bleeds like stink during the surgery. I'm a spine surgery PA, and anticoagulants are a huge concern for our surgeries. We worried about Xarelto initially because there's no reversal agent, but it really clears very quickly and it hasn't been a problem. (of course this is only from a surgical standpoint, doesn't address any other problems like brain bleeds, etc)

Good luck with the PEs, hope you recover fast and well!

Last edited by: dawnawanna: Oct 20, 13 13:18

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 14:03

Post #8 of 36 (6164 views)

SBRjen wrote:

I'm wondering if there is something about the blood of endurance athletes that precludes clotting.

I think you are asking what is the effect of a training program regularly in excess of 5 hours per week on clot formation (coagulation) and clot dissolution (fibrinolysis). In people with normal clotting factors, prolonged endurance training seems to reduce coagulation potential and increase fibrinolysis if the bleed is internal. So, I think your suspicion is correct.

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 14:07

Post #9 of 36 (6162 views)

Are you taking hormone based contraception?

Hopefully after 6 months this will be all behind you. Heal uo

Re: Bilateral Pulmonary Emboli [cyclingdoc] [ In reply to ]

Oct 20, 13 14:17

Post #10 of 36 (6152 views)

Thanks Jack. That was helpful. I am 44 with no family history. I have the CT on disk, but there is no written report. The doctors all say that I had bilateral large PEs, left larger than right. I'm not sure which pulmonary vein. Yes, I am aware of the risks associated with Xarelto. I am being extrememly careful and not cycling or trail running until I am off of this stuff. Thanks for the advice!!!

Re: Bilateral Pulmonary Emboli [CBJFan] [ In reply to ]

Oct 20, 13 14:20

Post #11 of 36 (6148 views)

Thanks so much. I definitely learned my lesson after I over-did it last week. That is so encouraging that you were able to run a marathon.

Re: Bilateral Pulmonary Emboli [cyclingdoc] [ In reply to ]

Oct 20, 13 14:23

Post #12 of 36 (6143 views)

cyclingdoc wrote:

Xarelto seems great to patients but to ER docs, surgeons, etc its a terrible medication since its not easily reversible like coumadin. It's in the works but not readily available yet. So be careful.

Agreed. Many hospitals don't even have the "right" agents on hand to reverse the newer anticoagulants if a patient suffers from a serious bleed.

Re: Bilateral Pulmonary Emboli [hercules] [ In reply to ]

Oct 20, 13 14:23

Post #13 of 36 (6143 views)

Wow Rob! You went through a lot. Thanks for posting your story and I would love to hear more about your research related to the relationship b/t PE, dehydration and slower HR. There is not much in the literature except for some case studies of athletes with true DVTs that turned into PE. I think that this would be a good reseach question for someone since there are so many distance athletes now.

Re: Bilateral Pulmonary Emboli [npage148] [ In reply to ]

Oct 20, 13 14:25

Post #14 of 36 (6139 views)

npage148 wrote:

Are you taking hormone based contraception?

Hopefully after 6 months this will be all behind you. Heal uo

I was, but not anymore! I hope so too. Thanks!

Re: Bilateral Pulmonary Emboli [jsoderman] [ In reply to ]

Oct 20, 13 14:28

Post #15 of 36 (6133 views)

jsoderman wrote:

Hi SBRjen, hope you a fast recovery...I'm an ER doc and I'd just like to echo what the other doc posted: be very careful....all of the newer anticoagulants (i.e. newer than coumadin) are essentially non reversible. In other words, if you come in after a bike crash all I can do is watch you bleed (think head injury...) That's a bit of an exaggeration but not much...

take care and get back at it as soon as it's safe

Thank you!!! I am being very careful. No cycling outside or trail running. It is great to have MDs on here! Jen

Re: Bilateral Pulmonary Emboli [jsoderman] [ In reply to ]

Oct 20, 13 15:37

Post #16 of 36 (6097 views)

JUST ran into this this week - ankle fracture that need ORIF and on Xarelto. FFP and wait some I guess ... Watching some of the literature carefully with the newer agents. "Cleared" in just over 24 hours I think?

____________________________________
Fatigue is biochemical, not biomechanical.
- Andrew Coggan, PhD

Last edited by: rroof: Oct 20, 13 15:38

Re: Bilateral Pulmonary Emboli [hercules] [ In reply to ]

Oct 20, 13 16:11

Post #17 of 36 (6062 views)

hercules wrote:

I also had a massive DVT and PE last February which was only diagnosed after a full body CT scan as I had done all the other heart tests due to having difficulty breathing etc., unfortunately for me a doctor put in an IVC filter which basically destroyed my life as I once knew it.

Not only did it rupture in the vein but when it removed it tore up my IVC and now I have stenosis of the vena cava, not to get into my issues too deep I suffered 3 more bad PE episodes during this period one actually stopped my heart, thankfully paramedics were able to save me, but I have been on Coumadin since and figure it will be for life even though I don�t have the clotting issues.

Coumadin is a pain having to get regular testing but you might want to find out with the drug you are taking what happens if you were to need immediate surgery as Coumadin can be reversed but others cannot, leading to some issues. Thankfully now my lungs are good even after the 4 PE�s no damage so that is great news, what caused my original DVT it is thought it was an unloader knee brace that was too tight on the vein at the back of my knee. (I had a VQ Profusion scan last week and got the all clear on my lungs)
Today I ride on my bike, swim, gym and a little running but I cannot achieve anywhere near I used to due to the lack of blood return to the heart through the vena cava, but after being fit all my life (I am now 56) it was something I fought back from not being able to walk across the hospital room without being totally fatigued to at least something that resembles being fit and active again.

Hang in there sometimes it can be a long road getting back from this yes you feel like everything is a struggle but you will get there with time, keep your blood thin but do have your blood tested when off blood thinners to make sure you don�t have any factors to make clots. Get a scan in a couple of months and you will be happy I am sure to see your lungs will be clear and good to go. Also get a follow up Venus doppler on your legs make sure the old clots have gone or at least are now attached to the walls of the vein which should not cause any more issues.

One of the doctors I saw at UCLA said that dehydration is a big factor in causing blood clots and he said athletes suffer a lot due to the slow heart rates and dehydration. So sometimes we can�t win for loosing! If you want any further information just send me an e mail, I will be glad to give you what I have learnt during this journey. Cheers LA Rob

Ummmmm...WOW!

Glad you are doing better.

-----
Fine Line Racing - "this is living"

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 16:11

Post #18 of 36 (6060 views)

Coumadin lifer here. 2009 and 2010, multiple bilateral PEs. no genetic factors. I think it came from dehydration at wildflower plus a long car ride. There is research linking endurance athletes to clotting

3 years later, am 40 pounds lighter and faster than I ever was pre clots. Just did IM Canada. Yes, there are risks and I accept them for now.

Good luck

Last edited by: ChrisM: Oct 20, 13 16:13

Re: Bilateral Pulmonary Emboli [dawnawanna] [ In reply to ]

Oct 20, 13 16:14

Post #19 of 36 (6055 views)

dawnawanna wrote:

Xarelto actually clears very quickly, we just stop it the day before surgery (like lovenox) and it's out of the system. In some ways easier to work with than coumadin (from a surgical point of view), even if you try to reverse the coumadin before surgery it still bleeds like stink during the surgery. I'm a spine surgery PA, and anticoagulants are a huge concern for our surgeries. We worried about Xarelto initially because there's no reversal agent, but it really clears very quickly and it hasn't been a problem. (of course this is only from a surgical standpoint, doesn't address any other problems like brain bleeds, etc)

Good luck with the PEs, hope you recover fast and well!

The concern is more with emergency surgery, traumatic bleeds, etc. Elective surgeries aren't the issue.

-----
Fine Line Racing - "this is living"

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 16:19

Post #20 of 36 (6046 views)

I enjoy these conversation because so little is known in the medical speciality relating "normal" disease processes to endurance athletes.

I too have seen case reports related clotting to endurance athletes. It has mostly been linked to long races, the resulting dehydration, microvascular damage, followed by a long trip home in a car or plane.

-jack

-----
Fine Line Racing - "this is living"

Re: Bilateral Pulmonary Emboli [SBRjen] [ In reply to ]

Oct 20, 13 16:34

Post #21 of 36 (6029 views)

SBRjen wrote:

npage148 wrote:

Are you taking hormone based contraception?

Hopefully after 6 months this will be all behind you. Heal uo

I was, but not anymore! I hope so too. Thanks!

there is your risk factor - over 40 on hormonal contraception (and endurance athlete). I seem to recently have a ton of clots in my practice.

Personally I do not use xarelto for PEs because there is not enough data. If it was a simple DVT I would be fine with using it but not bilateral large PEs. I also have one patient with an arterial clot and would not use xarelto on him either.

Re: Bilateral Pulmonary Emboli [meuf] [ In reply to ]

Oct 20, 13 16:51

Post #22 of 36 (6011 views)

meuf wrote:

SBRjen wrote:

npage148 wrote:

Are you taking hormone based contraception?

Hopefully after 6 months this will be all behind you. Heal uo

I was, but not anymore! I hope so too. Thanks!

there is your risk factor - over 40 on hormonal contraception (and endurance athlete). I seem to recently have a ton of clots in my practice.

Personally I do not use xarelto for PEs because there is not enough data. If it was a simple DVT I would be fine with using it but not bilateral large PEs. I also have one patient with an arterial clot and would not use xarelto on him either.

that's a great point.

-----
Fine Line Racing - "this is living"

Re: Bilateral Pulmonary Emboli [meuf] [ In reply to ]

Oct 20, 13 17:13

Post #23 of 36 (5993 views)

wow...all i know is be an advocate for your own health. had a mild stroke at 58 and was put on a 325 aspirin, after about six months it started bothering my stomach. initially my primary told me to stop the asprin. after about two months he checked my coag. number and said the d-dimer was high so he put me on xarelto with no warning on outdoor bike or anything. at the request of nuero doc(because of her confusion as why my primary put me on xarelto) i went to a blood doc for a full panel. first thing he asked was why i was on xarelto and i told him what i stated here, he said that med can easily kill you by bleeding out.

by saying advocating for your own health dont be afraid to quetion docs. and dont be afraid to ask to see a specialist. i was out doing 60-70 mi. bike rides with the ignorance of the risk of xarelto. i have learned that there are more blood disorders that can cause clots than most docs do not check for. alot of times they just check the main stream type. you may want to see a blood doc.

Re: Bilateral Pulmonary Emboli [cjb3] [ In reply to ]

Oct 21, 13 7:07

Post #24 of 36 (5864 views)

cjb3 wrote:

by saying advocating for your own health dont be afraid to quetion docs. and dont be afraid to ask to see a specialist. i was out doing 60-70 mi. bike rides with the ignorance of the risk of xarelto. i have learned that there are more blood disorders that can cause clots than most docs do not check for. alot of times they just check the main stream type. you may want to see a blood doc.

Thanks for the advice. The "bike angels" were certainly with you while you were on xarelto and riding!! What I understood was that a blood or lung function test wouldn't be valid right now since I have the PEs and am on Xarelto. The plan is to do all testing in March when I am off of it. I will be sure to get every test possible!! Thanks to everyone for the posts!!!

In Reply To:

Re: Bilateral Pulmonary Emboli [cyclingdoc] [ In reply to ]

Oct 21, 13 8:00

Post #25 of 36 (5827 views)

cyclingdoc wrote:

I enjoy these conversation because so little is known in the medical speciality relating "normal" disease processes to endurance athletes.
I too have seen case reports related clotting to endurance athletes. It has mostly been linked to long races, the resulting dehydration, microvascular damage, followed by a long trip home in a car or plane.
-jack

I couldn't agree more. Too often the medical community unwittingly gets the blame for diagnosing "pseudo"diseases in athletes, endurance especially (e.g., pseudoanemia).
Based on my case studies only, endurance training decreases coagulation potential for several hours after exercise, thus elevating the risk for internal bleeding and larger clots.

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