Sorry, but unless this involves Donald Trump restricting gun rights of atheist immigrants while watching cat videos, the thread probably belongs in the other forum.

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Remember - It's important to be comfortable in your own skin... because it turns out society frowns on wearing other people's

Ha, I was trying to figure out the forum structure, so I used this thread as guide...

http://forum.slowtwitch.com/...od_clot/DVT_P5859828

I suspect he'll get a few intelligent responses form this forum. And over on the tri forum, he'll be labeled a cheater and violently attacked.

HEY! We agree! Time to celebrate... or is commiserate?

Hey that's my thread! Notice though, that I didn't ask for any training advice, just medical...

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I miss YaHey

Do you plan to run with an 80 pound pack uphill both ways carrying an obscenely over priced rifle shooting at targets as they appear in 120 degree heat with 105% humidity in a blizzard while lifting weights at strongman level while discussing your narcissistic personality? If so forge is your go to guy. Otherwise no one on here exercises.

Smiles all around for that

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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

Liking you guys already! :D. I haven't been able to really run in 6 months, I'm 25 pounds overweight, I'm a wimp afraid to ride bikes on public roads, my wife is now faster than me, and I have low T! I'm sure I left a couple things out. :D

The real question is: did you get a sheep?

Give it time

Rob,

I'm exactly 6 months post a diagnosis of a DVT with numerous pulmonary emboli. It's been a very frustrating 6 months. A bike/dog collision had happened 3 weeks before I'd ended up in the ER. the first sign that something was wrong was a rapid and large degradation in my fitness that preceded obvious symptom in my calf that so common with DVTs as you experienced. The emboli were obviously affecting me long before I noticed any sign of the DVT in my calf.

I spent a couple of days in the hospital initially on Lovenox and then was transitioned to Xarelto. I visited a pulmonologist ~ 3 months post hospitalization and was advised that I should end my anticoagulant therapy at 3 months as they felt my DVT was of the "provoked" variety. So I stopped the Xarelto but 5 days later I began to show the DVT symptoms again. I've been back on anticoagulant ever since. I'm now working on getting a referral to a hematologist. As a lead up to that my GP sent me in for an ultrasound to check the status of my clot. Surprisingly at least to me, they found would is believed to be a new clot in the same vein. Hopefully the hematologist will bring useful insights to whole equation. There is genetic testing that might be done to look at clotting factors.

The upshot is that I recommend getting an appointment with a hematologist early on. Most GPs are not at all up to speed regarding your/my problem. This is a serious situation and you/I don't want a stroke as a result of ineffective treatment.

Good luck,

Hugh

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Genetics load the gun, lifestyle pulls the trigger.

finally last year after 5 days, 2015 I was there 14 days and had unusually bad weather so ate the tag. 2015 woke me up how hard it is and why I trained so much harder 2016. :D

sciguy wrote:

The upshot is that I recommend getting an appointment with a hematologist early on. Most GPs are not at all up to speed regarding your/my problem. This is a serious situation and you/I don't want a stroke as a result of ineffective treatment.

great info Hugh! yes, I don't feel like anyone really knows exactly what is going on. The big indicator of that was 4 days in hospital where I was consulted each day by a different doctor or specialist, no one was completely on the same page. I have my followup pulmonologist visit in 10 days, but not expecting I will learn much more. I had buddy recommend a hematologist just this week and hadn't thought of that yet. I have had the full battery of blood tests and clotting indicators through GP, but supposedly no red flags with that.

I will try to give you my insight from my history if this will be helpful as you really are not alone in this PE issue. Mine started out Thanksgiving weekend 2011 I was on a trip to San Francisco, I woke up on Saturday just felt off, but my wife noticed my face was quite red, thought nothing of it, except for not feeling well. Came back went to the doctors had some blood tests, thyroid checked etc. nothing showed up then I started to notice my times for running and swimming were slower but again no leg pains no nothing, by the end of the year 6 weeks into it I started to feel fatigued more, and just felt rotten without knowing why.

The I Took a trip to the UK came back in the new year I went to the ER mid-January as I felt bad, they did a cardo catheter procedure to check my heart nothing showed up but was told to follow up with a cardiologist, which I did had a complete work up, echo, ultra sound and treadmill nothing except still feeling fatigued and shortness of breath by now. The cardio doctor recommended seeing a gastro doctor which I did, he examined me and said let’s do a body CT scan, so on the Friday I had the CT scan, on the Saturday morning I went out for a short run as I just didn’t feel up to my usual 50 mile Saturday morning ride something I hardly missed anyway I was home about an hour after my really lousy run when the doctor called and said you have to go immediately to the local ER as I had very bad bilateral PE apparently my left lung was in very bad shape full of blood clots.

So, off I went to the ER, they admitted me and then did the Venus Doppler on my legs and found a blood clot in my left leg from the groin to the ankle. I was put on lovernox immediately there was actual talk about taking me to some facility in La Jolla who does procedures on the lungs to remove blood clots quite a dangerous operation but then it was decided I was doing quite well, I guess being so fit saved me. I kept being asked didn’t I feel any discomfort in my leg and no I didn’t nothing. I was given a work up to see if I had a factor V issue but again nothing showed up, so why had the blood clot in the leg started everyone kept asking, it could have been a knee brace? But really no one to this day can figure it out.


Unfortunately for me, the doctor who removed the massive clot in my leg installed an IVC filter which ended up rupturing in my IVC vein within 2 weeks and basically for the past 5 years I have suffered terrible back and groin pain since due to the filter sticking into the nerves in my back and psoas muscle, after about 6 months I got the IVC filter removed after a couple of attempts but it severely damaged my IVC vein, but all of this issue is another nightmare story.


I have stayed on Coumadin since then due to the damaged IVC vein, I got back to training, running, riding swimming etc. without too much of an issue, thankfully I had bunches of tests to check my heart and lungs after the PE’s and no damage was done except some scaring on the lungs so I lucked out there I guess.

So today I look back and think wow here I was super fit and something like this happens perhaps due to the knee brace that damaged the vein at the back of my knee, but who really knows what or why. I have a Venus Doppler every year since then and it still shows scaring and damage to the vein behind the knee but no clots thankfully. Prior to all of this I was super fit, cycling over 100 miles a week running 40 miles and swimming 4 hours and that was just the regular training more when I was training for Ironman which I have been doing since 1982 but thankfully I was so fit just like you as it helped save my life, many times people with PE's do not live. I had a second one in July after groin surgery which stopped my heart thankfully the wife was home and called the paramedics who basically saved my life on that one.
I hope this helps not sure if it answers your questions but it can just happen, after speaking with lots of doctors at UCLA and around LA it seems it happens a lot to people.

There really needs to be a like button here.

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"In the world I see you are stalking elk through the damp canyon forests around the ruins of Rockefeller Center. You'll wear leather clothes that will last you the rest of your life. You'll climb the wrist-thick kudzu vines that wrap the Sears Towers. And when you look down, you'll see tiny figures pounding corn, laying stripes of venison on the empty car pool lane of some abandoned superhighway." T Durden

Hi Rob,

I'm a little over 3 years post-PE. Like you I was (and still am) an avid exerciser who was only symptomatic with exercise for months leading up to proper diagnosis. I was initially misdiagnosed with exercise induced asthma. Treatment was increasing amounts of inhaled steroids, which did nothing. I ultimately passed out one night while putting my daughter to bed. CT scan in the ER showed saddle embolism and more smaller, bilateral PE's than they could count. I never felt bad (aside from passing out) and never needed O2 in the hospital. I was given tPA to break the clots and released from the hospital after 7 days on lovenox and ultimately bridged to coumadin. Genetic tests came back with a single clotting disorder -- that combined with the massive nature of the PE makes me a lifer on anticoagulents. Aside from taking pills and eating the same amount of leafy greens daily, not much has changed. I exercise and recreate just like I did prior to the PE -- although no sparring or heavy contact sports. I'm interested in switching to one of the novel anticoagulents, but my hemo wants to see more clinical data on reversal drugs/techniques given my active lifestyle (he's conservative and is worried I'll hurt myself and bleed out).

I second the advice given above and find a good hematologist. Also, if nothing turns up to explain why you got a DVT/PE, it may be wise to inquire about genetic screening for clotting factors. It is my understanding that some of the more commonly used protein resistance screens can yield false results. Good luck. There's a normal life after a PE. You'll be fine.

They really love their twitch hunts over there. Some of those guys are personal friends or people I role in the same circles with so I get their facebook posts. I'm not going to mention names, but I guess there was a thread where they went after some lady for doping despite the fact she has a 15+ hour Ironman. The snarky bastard in me wanted to call them out, but I restrain myself on facebook. The idea of going after somebody for doping who isn't competitive by any stretch seems silly to me.

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"In the world I see you are stalking elk through the damp canyon forests around the ruins of Rockefeller Center. You'll wear leather clothes that will last you the rest of your life. You'll climb the wrist-thick kudzu vines that wrap the Sears Towers. And when you look down, you'll see tiny figures pounding corn, laying stripes of venison on the empty car pool lane of some abandoned superhighway." T Durden

Welcome to the club. There are a lot of great posts on the Tri forum. My story is pretty similar to SciGuy's.

Last year a had a whole rash of weird and random injuries. First one showing was diagnosed (incorrectly) as a muscle tear in my bicep. Couple weeks later I had severe groin pain and couldn't hardly sit on a bike after a couple of long hot rides. Couple of weeks later I went to bed feeling fine and woke up in the middle of the night with a sharp stabbing pain in my lung. So bad I couldn't sleep. Pain came and went and the next day I was feeling good enough to go for a ride. Made it 10 miles from home and called my wife for a pickup, straight to the doctor. Did EKG and chest xray... nothing. Go home and sleep it off. Went another couple of days of pain coming and going before it got REALLY bad and went to the ER. After ruling out other things they found PE's in my lungs with a CT/angiogram.

I am young and healthy with no known risk factors. Spent a night in the hospital on Lovenox and went home on Xarelto. I was cleared right away to exercise as hard as pain would allow. Based on what they saw the various docs agreed no risk of the clot coming loose from the lung. It took probably 4 weeks for the pain to really go away. I lived on Tylenol in the meantime. Hang in there, pain will get better.

Couple weeks after the ER visit my now ex-PCP ordered a hematology workup, saw weird results and sent me to an actual hematologist. This is the best thing I could have done and is something you should do ASAP. Once I got talking with an actual expert I found out all the scary blood tests are unreadable while being treated on Xarelto.

I stayed on anticoags for 6 months and stopped late January. After less than a month I got severe groin pain and swelling after a couple rides. This went away after a couple of weeks of rest but then remanifested itself as superficial clots in both legs. I had a lower body Doppler done and found veins nearly obstructed in both legs as well as a DVT.

In that gap we got the hematology workup done again and found no known risk factors. Apparently 10% of clotters get them from an unknown disorder, and I'm in that bunch.

At this point I will likely be on anticoags for life. We have discussed switching to Pradaxa for long term treatment. Luckily I should have no permanent damage this time around but may not be lucky again in the future.

Takeaways:
- Unknown pain is always an emergency until proven otherwise. Clots can happen to healthy people too. In hindsight the warning signs were brutally obvious.
- See a hematologist. PCP's generally have no idea about the specifics. Even though this stuff is scary it was very very helpful to discuss it with someone who actually knows what is going on. They are they experts that can help you assess your present and future risk, both of treatment and future clots.
- Hang in there. It'll get better.

Just as an FYI, for those who are on an anticoagulant, if you're taking primidone for any reason it interferes with Xarelto or Eliquis. I found an over-the-counter medication called DHA which is doing pretty good in place of the primidone.

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I miss YaHey

Thanks everyone, great info! I have learned so much more from this thread than the various doctors that don't seem to be certain about anything.

Many of the similarities and common advice I'm noticing...

• started as leg pain similar to pulled muscle we often get as triathletes.
• shortness of breath and decreased performance common symptom.
• most doctors and tests have problem diagnosing until you get a leg echo or spiral CT.
• get a hematologist!
• able to run and exercise eventually.

Some of the questions I still have outstanding and may never know...

• what were the exact root causes.
• will the leg swelling ever go down completely (currently 2 months).
• when will I be cleared to run again and when will I be able to run distances without symptoms.

Your question prompted me to measure may calves this afternoon. When I first went into the ER the calf with the DVT was 1 1/2" larger in diameter. I didn't measure it over the following days but know it inflated more. Now six months later it's only ~ 1/4" greater in diameter than the unaffected calf. I could still "feel" the distention of my calf at 2 months so I think you'll see significant improvement over the next few months.

Good luck,

Hugh

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Genetics load the gun, lifestyle pulls the trigger.