What to do while my Deep Vein Thrombosis goes away

I was recently diagnosed with a DVT. Actually kind of a relief because I’ve been having minor symptoms for the last three months that I just couldn’t figure out (mostly one tight calf). Thank you to the posters from the early 2010’s who shared your experiences with DVT & PE for helping me make sense of a few things. Anyway, it has been a week since I finally clued in and went to the hospital and got a diagnosis. I’ve been on blood thinners ever since, but the pain has become tremendous. I went back into the hospital thinking something must not be right but they tell me this is all a part of the process. So now I am at home with my leg up killing time until I can stay standing for five minutes without crying.

The clot is pretty extensive. Apparently it starts up high above my knee and goes all the way down to my calf. As soon as I stand up the veins in my leg fill up like balloons and it takes awhile for it to drain back out once I sit down with my leg up. I’ve been scouring the web but haven’t found a lot of first hand info on how long it takes to get past this phase of “major obstructive clot waiting to dissolve”. Anyone care to share their recent experience with this?

Worst part is that I was on a solid roll training for Victoria 70.3 happening at the end of May. The way things are looking that will probably get deferred or transferred. Calgary 70.3 at the end of July is also in jeopardy. Who has the snake oil I need?

It usually takes time to slowly dissolve. Sometimes they will put a filter in your artery to catch the clot or piece of it should it start moving towards the lungs. My brother in law had it bad, and still has a couple screen filters installed. Plus, he is still on warfarin (blood thinner) and has been for years. Seems to get along fine now though - after the clot finally dissolved. Anyway, its not all that uncommon and luckily they found it before it started causing real problems near the lungs.

MD here.
Not my area, but an area I am frequently involved in caring for.
This is really significant.
Thoughts of training and competing should be secondary to ensuring you are safe, appropriately anti coagulated and not doing anything to cause you to have a major bleeding episode (like crashing your bike).
Really need a haematologist on here to advise you as to how long you need to get some clot stability etc, but it sounds like this is an extensive DVT so you need to be really really careful and put to the side any thoughts of racing and most training in the meantime until you can get some clear, safe advice.
Massive PE’s can be essentially instantly fatal, but also when you are fully anti coagulated you need to be super careful in terms of what you do as a fall and hitting your head can lead to major problems as well.
If I get a chance today I will search for some evidence based guidelines which may help you,
All the best.

Thanks, I appreciate the advice. It’s a frustrating situation on account of the pain/discomfort and even more so that I don’t tick any of the ‘at-risk’ boxes that usually pre-dispose people to DVT. This will be a week now on Apixiban. Feeling pretty useless at the moment and growing concerned (unnecessarily or not) that this will have long term effects.

Thanks, I appreciate the advice. It’s a frustrating situation on account of the pain/discomfort and even more so that I don’t tick any of the ‘at-risk’ boxes that usually pre-dispose people to DVT. This will be a week now on Apixiban. Feeling pretty useless at the moment and growing concerned (unnecessarily or not) that this will have long term effects.

The anxiety re the long term effects is something everyone goes through, just take things one day at a time now and shift your focus on what you can do etc.
You will likely need to go through a thrombophillia screen and be tested for various mutations that can cause abnormal clotting, if the DVT was not clearly provoked by long term travel etc.

Unfortunately you are at the start of a journey, and this early period is quite tricky given the size of your clot. As I said I will see if I can find some relevant guidelines but until there is decent clot stabilisation and resolution I doubt any exercise will be on the cards. The sooner you can pivot to thinking that the next season is a potential write off the sooner you will be able to come to terms with that and focus on other things.

When I had mine, I was told that walking was good for it although he did not want me getting my HR up too much. Ie. Hiking hills.

For me, it dissolved fairly quickly but I was still out of commission for about 2 months. I got the go ahead for swimming before running/biking.

When I got mine, they put me on Xarelto that day, that night a piece went to my lung. That’s something you definitely don’t want to happen. I got it from sitting a very long time in one position on a plane.

I went to the emergency room at 4am and stayed the following night. It hurt a lot but what hurt the most was when I had an untrasound done and the tech dug it into my chest wall looking for fragments.

I think I was back to running 3 or 4 days later and haven’t had a problem since (2018).

I had almost exactly the same but not as extensive as yours. My Doctor told me that there is a small percentage of clots that have no obvious cause and are generated randomly by the body.

I had no obvious reason for my clot which started in my calf and some broke off into my lung. The Doctor did mention that dehydration can be a concern.

I was on meds for 3 months and now I take a daily aspirin, everything appears to be going well and I’m 2 years down the line.

It’s frustrating as hell but good luck.

OP – did you do blood testing to make sure you’re not predisposed to clotting? I would do that if you haven’t already. I had a PE in 2016. I missed it when it was presumably in my legs because my legs are always sort of tired with the training I do. Turns out I unknowingly had factor 5 & have to be on thinners for life. But I haven’t had any issues in almost 6 years now. Coming back from the clot was awful. In my case, it was mostly anxiety/fear holding me back but I was only running at the time & got back to full training in ~2 months. Was able to run a half marathon pb 4 months post clot & a marathon pb 6 months post clot. Still improving now & really liking triathlon.

My advice: take as much time as you need coming back. Make sure it’s dissolved. Do an ultrasound to confirm. Then ease back into training. Don’t force hard training. Be kind to yourself. You’ll be surprised at how quickly fitness comes back.

I’m not certain what tests they have performed at this point. I suspect that they performed the d-dimer before they did an ultrasound. It’s funny-not-funny that Slowtwitch forum has been a more helpful and informative resource than the medical professionals that I have talked to so far. It’s been a week now that I have been on blood thinners and if I’m not sitting or laying with my foot up the pain is excruciating. Not so concerned about prolonged blood thinner treatment or missing the season, a disappointment for sure, but I am worried that there has been no relief of symptoms this far in now.

Back in 2012 I had a massive blood clot in my left leg that went from my groin to my ankle, along with multiply pulmonary embolisms in both lungs, had I not been so fit back then I would be dead according to the doctors. Anyway, after a chest CT showed the multiply clots in my lungs, I was told to go to the emergency room of the local hospital immediately. I was admitted and saw a vascular surgeon along with a hematologist who started me on Lovenox injections in the stomach immediately. They did the Venus doppler and found the massive clot in my left leg.

I was then scheduled for surgery the next day to remove the clot, it is called a thrombectomy, unfortunately for me he also installed a IVC filter which he left in after the thrombectomy which ruptured into the vena cava vein a few days later, but that’s a whole other story. Anyway, the clot was removed, they went in through the groin and basically sucked it out. I was kept in the hospital for about 5 days while they treated my PE and made sure everything else was okay. I never felt any issue with my leg, just shortness of breath when exercising that had been going on for about 3 months.

I was left with a small residual issue in a secondary vein behind my knee. It turns out my clot was caused by wearing an unloader brace which caused damage to the vein at the back of the knee.

I would seek some advice from a vascular surgeon or intervention radiologist, to see if they could remove the blood clot as it sounds like a pretty large one to just sit around and wait for it to resolve on its own with the blood thinners, which really won’t do much for the actual clot.

Best of luck to you with your blood clot and moving on, my advice do not get an IVC filter installed whatever treatment they offer down the road. It was that issue of it rupturing in my vein that changed the course of my life and almost killed me three times with the numerous surgeries needed to remove it later on, it was a nightmare I have never gotten over. Cheers LA Rob

My situation sounds remarkably similar to yours.

Last year I was training for an ironman. I had been battling niggling calf injuries in my training, but thought I was generally on track. Then, over the course of a few days, what began as a minor pain in my calf got progressively worse. The calf started to balloon. When I couldn’t ignore it anymore I went to the hospital to get it checked out. I learned I had a massive blood clot from groin to ankle. They told me I was lucky to be alive. It hurt like hell. I got hooked up with a good specialist, got on a blood thinner (Xarelto), and waited for the excruciating pain to subside.

I listened to my doctor. In the beginning of my recovery, I walked as much as I could - which wasn’t much - to keep the circulation moving. Shortly after that, I discovered I could swim moderately with little pain. Next came moderate biking. Intense swimming and biking was out of the question, but I could do decently long sessions of both swimming and biking at moderate intensity. Running came back online last. I had to run slowly. Really, really slowly. If I ran at even a moderate pace, a terrible pain in the calf would return immediately. And even if I ran slowly, distance was a big limiting factor. At first 200 meters was the furthest I could go before my calf screamed at me to stop. After a week or so of returning to running I could make it 400 meters if I was lucky. You get the picture.

At the three month mark, most of the clot had dissolved. My specialist gave me the ok to get back to real training. Nothing too intense - listen to your body kind of advice - but it didn’t all have to be easy and slow either. All things in moderation.

At the six month mark, there was little of the clot remaining. But once you get a clot, you’re at an increased risk of it returning. The doctor moved me to a low dose of Xarelto. Though taking blood thinners have risks associated with them, so does not taking them - namely, in my case, about a 10% chance clotting would strike again. The blood thinners bring my risk down to about 1-2%.

I’m now at the 8 month mark. Things are much better. My calf is still a little swollen, and I still occasionally get pains and cramping in it. I’m getting physio for that, and it is helping. I’m two months into an ironman training plan and hoping to be at Ironman Lake Placid in July.

The motto that has served me well in my recovery from this: Be patient. Be thoughtful. Be strong.

Feel free to steal it if it might help you.

Best of luck with the recovery!

David

I really appreciate all the responses. It has been more helpful to hear from all of you than it has been to talk to any of the nurses or doctors that I’ve connected with. I’ve been laid up almost two weeks now and haven’t been able to walk much. It’s been feeling better the last few days though so I’m a bit more optimistic about the future. Going to give some light swimming a shot tomorrow just to do something again. Doing some ‘research’ my best guess at a cause is that I have May Thurner, and riding in aero pinches off the vein. This all started happening when I bought a TT bike and started going hard on Zwift and lately I could feel my calf start to seize up until i sat back up again. So long as I’m doing half distances and below I suppose I could still be competitive enough on a good road bike if aero remains out of the question. Either that or get my stents.

Hello,

DVT and PE here in 2013 so this is my advice.

From what you’ve written, I don’t think you have medical advice you trust. Not saying it’s bad, but I would make sure you are working with a team you trust. Information from a web forum about something as significant and individual as DVT should not be the most reliable information you have! It should, at best, help you feel comfortable in the advice you are getting from the team treating you.

When I had the PE, I was hospitalized for 10 days, on heparin to dissolve the clots. After release, I was on warfarin. My doctors also did extensive blood work to identify any causes, and discovered my protein S level is (too high or too low, I forget which, but apparently I’m off the chart in this regard). So that has meant I continue to use blood thinners, having switched from warfarin to Xarelto a year ago to avoid food interactions and the need for monthly D-dimer tests. Did have a liver issue (high CPK) after racing Formosa Xtreme Triathlon (228km and 6850m climbing) that may have simply been from muscle breakdown or Xarelto. Switched to another drug for a month, CPK returned to normal, and have since gone back to Xarelto and no liver issues.

The recovery for me was not painful but it was long. Lots of elliptical trainer to build aerobic fitness and focus on circulation. No long term consequences in any way aside from the bleeding risk that comes with being on blood thinners. However, in my experience, because my body is so beast at clotting, even with the Xarelto I seem to bleed pretty much like anyone else and it stops on its own.

Good luck you to and look at the big picture, not the race/training picture! Many sunny, happy days of training ahead of you my friend!

Do you think that cyclists and triathletes are more prone to get DVT than say swimmers and runners???

Would strongly advise to stay away from any fall risk sports while on the blood thinners during you recovery. That would be inclusive of riding outdoors. Reversing thinners in an emergent situation is complicated and carrys additional risks. None of the thinners wear off fast enough in an emergent situation.

I really appreciate all the responses. It has been more helpful to hear from all of you than it has been to talk to any of the nurses or doctors that I’ve connected with. I’ve been laid up almost two weeks now and haven’t been able to walk much. It’s been feeling better the last few days though so I’m a bit more optimistic about the future. Going to give some light swimming a shot tomorrow just to do something again. Doing some ‘research’ my best guess at a cause is that I have May Thurner, and riding in aero pinches off the vein. This all started happening when I bought a TT bike and started going hard on Zwift and lately I could feel my calf start to seize up until i sat back up again. So long as I’m doing half distances and below I suppose I could still be competitive enough on a good road bike if aero remains out of the question. Either that or get my stents.

With respect, your research is almost certainly wrong and why you always need to be incredibly careful about what you find using dr google. As another poster has mentioned, part of your work up should include comprehensive thrombophilia screening for things like Protein S deficiency like the above poster has.

Make sure you are being appropriately worked up in this regard. It would be highly unusual for this to be because of being locked in an aero position for too long, Occam’s razor would suggest something much more common as the cause.

Do you think that cyclists and triathletes are more prone to get DVT than say swimmers and runners???

In essence no, although I have not done a literature search on the subject.
See my reply above in relation to the risks of self diagnosis.
All sports will predispose to certain types of injuries etc but it would be a stretch to say that cyclists and triathletes have a greater risk of DVT, when you look at the three components of virchows triad needed to create a clot you don’t really even have stasis as the muscular pumping that is associated with riding is immense in the leg vessels. All three disciplines have this in triathlon, hence it is important for the OP to look for other causes.

Do you think that cyclists and triathletes are more prone to get DVT than say swimmers and runners???

In essence no, although I have not done a literature search on the subject.
See my reply above in relation to the risks of self diagnosis.
All sports will predispose to certain types of injuries etc but it would be a stretch to say that cyclists and triathletes have a greater risk of DVT, when you look at the three components of virchows triad needed to create a clot you don’t really even have stasis as the muscular pumping that is associated with riding is immense in the leg vessels. All three disciplines have this in triathlon, hence it is important for the OP to look for other causes.

OK, thanks for your informal counsel!!!

I initially sent a PM here because there were some specifics that I thought deemed discussing. But in following along, I think there are some general thoughts that may be helpful, and clear up some cluttered thoughts/advice. I am a sub-specialist who deals with clot both inpatient and outpatient.

First. The treatment of DVT or PE is systemic anticoagulation. Full stop. The only true indication for an IVC filter is a contraindication to being on blood thinners. There is some nuance and there are special circumstances, but IVC filters when used should only be used as a short-term option. You still ideally need to be on blood thinners, as you can develop collateral vessels around, and they are thrombogenic in and of themselves. Also, as noted, trying to remove them after too long can cause major complication.

Heparin is good in the acute setting as an IV agent. Lovenox is also appropriate. Then Warfarin and the Factor Xa inhbitors (Apixaban and Rivaroxaban) are oral outpatient therapies. None of these “dissolve” clot. The body resorbs clot. But the thinners help prevent more clot from forming, and help in the breakdown or resorption process. There are thrombolytics (clot buster), but this is reserved for absolute life or limb threatening situations.

Warfarin is the old mainstay. It is a Vitamin K antagonist, and subject to labile effectiveness based on dietary changes. Therefore, dosing can fluctuate and it needs to be monitored closely with frequent INR checks. The Factor Xa inhibitors are fixed dose, and much more stable with their effect. They don’t require monitoring. The issue as pointed out is that in general, they are not immediately reversible, so any trauma can be life threatening.

In OP case, a large/extensive DVT can cause post-thrombotic syndrome, which can have long-term consequences. So there is sometimes a role for an interventional radiologist to perform catheter directed thrombolytics. But that is a decision made by thoughtful evaluation and sub-specialist discussion. This also goes for sub-massive pulmonary embolism. But again, requires a highly sub-specialized discussion and approach.

Regarding risks. Clots are either provoked (associated with a risk factor) or idiopathic. Risk factors can be related to long travel and immobility, orthopedic/routine surgery with prolonged immobility, smoking, hormonone therapy (testosterone, estrogen), malignancy (everyone with a clot should be assessed for age appropriate cancer screens). May Thurner is a rare, but anatomical risk factor. Then there are inheritable and, or acquired thrombophilia or clotting disorders. This work-up is complex, does not need to be performed in the immediate setting, and should be done by a thoughtful sub-specialist (Hematologist). Lastly, there is idiopathic, meaning no clear contributing factor is identified. Treatment duration is based on whether or not there is a modifiable risk, or not. If there is a clear clotting disorder, or clot is large/life threatening and idiopathic, then treatment is often indefinite.

Activity level. Many people are very active on long-term full dose anticoagulation. Many people are injured while on anticoagualtion, and there are good stabilizing therapies available. But, obviously, hypervigilance becomes important. Regarding exercise tolerance, everyone is different. If clot is limited to extremity (DVT), then generally want several weeks of stability and tolerance of anticoagualation before attempting to return to vigorous activity. With pulmonary embolism, there will likely be some efffects on endurance, but that can and should improve.

Sorry to have droned on. And apologies for not weighing in sooner. But wanted to provide some clarity to the very informative and well intentioned advice everyone has thus far provided above.

ETA: And what Amnesia said! :slight_smile: