Amaris White was diagnosed with deep vein thrombosis (DVT) and bilateral pulmonary embolisms (PEs) in August 2012 when she was 25 years old. Her DVT was so severe (phlegamasia cerulea dolens) that her entire left leg, through her pelvis, and nearly all the way to her heart was one enormous blood clot! She was diagnosed with Factor V Leiden and is currently taking xarelto and a baby aspirin daily.
She is very lucky to be alive.
This is her attempt at sharing the risk factors and warnings signs of a DVT/PE so that others may avoid a similar legscapade.
Amaris grew up in California and is currently working as an in house lawyer in New York City. She loves to run and travel the world. She has run eleven half marathons and one marathon–the NYC Marathon in November 2014! 🙂
You can learn more about blood clots and help STOP THE CLOT with the National Blood Clot Alliance. The NBCA provides support to those who have experienced blood clots, and saves lives by spreading awareness of DVT to the general public–donate to STOP THE CLOT today!
Thank you! 🙂
Follow Amaris’ progress and adventures on Instagram:
@amarisrw | #fightdvt
Fight Deep Vein Thrombosis 
Dear Amaris,
I so appreciate your blog! I’m thrilled for you that you completed a marathon and I love that you posted pics of yourself with the one compression stocking. That is me!
14 months ago when I was 39 ,I suffered extensive dvt that was misdiagnosed for 6 weeks. I was very active at the time and didn’t fit the profile of someone who would get blood clots. Unfortunately, my leg was also blue before I received any anticoagulation.
I couldn’t walk for months..have improved but far from better .I am still having discomfort difficulty standing stationary. Do you still feel this as well?
Also , I am dying to get back to excercise and feel my self sweat. I was doing okay, walking up to two miles and biking a bit, then 6 months ago I developed a strong burning sensation and a hard lump in my calf muscle after exertion…in other words I can get going but Pay for it for days after. I am afraid to even walk around the block at this point because I’m tired of pain. Do you ever get this burning? Or hard painful leg after running?
Thanks again for this blog, please keep it going..you are an inspiration to me and I’m sure many others 🙂
Jennifer
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Hi Jennifer,
I took a break from my blog after the marathon so I’m only catching up now — sorry about the delay in replying!!! I’m so sorry to hear that you also experienced a severe DVT. I know how it can be so frustrating, especially because you can be left with permanent damage when it’s not properly diagnosed or treated right away!
I still do have some discomfort in my leg, mostly when I’m standing or sitting in a tight space with my leg at a 90* angle. For me, the DVT severely damaged my left leg and caused something called post-thrombotic syndrome, meaning that the valves in my leg that normally help pump the blood up (against gravity) no longer work. If I’m walking/running, that movement is enough to manually pump the blood back up. The swelling even when standing has and continues to improve regularly — this is because my body continues to make new veins (collateral veins) to replace the old ones that are now out of commission. It was running that absolutely encouraged my body to make these new veins.
I’m sorry that working out has been so difficult for you. In the early days, any kind of working out was so incredibly painful for me. I would get bruises on my leg (still do when a run a lot) because of the blood thinners, and it would feel like my leg was going to explode if I kept going on the treadmill. I would definitely first check with your doctor, but for me, I was only helping/encouraging my leg but pushing myself so much.
I’m not sure what the strong burning sensation or hard lump is in the days after the run. My pain would be during the run, and if I elevated it after, the swelling would go down and with it, the pain. I wonder if it’s muscle atrophy? I was in a bed for so many weeks and unable to walk for so many weeks that my left leg became so week and it was really hard to get muscle and strength back in the leg. Have you also considered the rowing machine? You’re not working against gravity as much, but it’s a really great work out and really gets the blood moving around your circulatory system.
Good luck with everything and definitely keep me posted!!
Amaris
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Amaris! Great to hear from you! I know you were given the ok to take off the stocking ( when not running) , is it working out for you? I hope so! I am still struggling with the same troubles I posted before. I’m sure I also have pts. I have seen 4 vascular surgeons and they all hesitate to diagnose that…I’ve also been measuring my legs ( obsessively ) and noticed I still swell a tiny bit when wearing them. Did you? Just wondering if swelling within a tight compressed compartment could be actually causing more pain. The rowing machine is an excellent suggestion, I will give it a shot. Keep blogging – everytime I google dvt, the things I read make me shudder
your positivity & perseverance in beating this is very encouraging! All the best to you, Jennifer Sent from my iPhone
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Just found blog and am glad I did. I am 69 yrs and carry massive dvt in both legs and pelvic real. Appeared in 2012 after heavy chemo for 2004 colon cancer. I became an avid swimmer/pool exerciser but really miss running/jogging 10ks Swimming is great but anti-gravitational. I just seriously started pushing myself and yes it is a real struggle that I WILL conquer! I am on caumadin forever and I wear compression leggings under sweat pants. But I may try to do without and see how that goes. If you or anyone has advice on what type doctor is best to consult please let me know. My vascular surgeon in Sarasota Fl was great but offers no advice on running but kind of against running in general. I have access to the west coast of Oregon (Eugene/Portland) a runners paradise, but over the phone physical therapists and sports medicine clinics seem to be of no help..I would appreciate any suggestions. Cool Runnings !
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Thank you so much for this blog. 🙂
I have a knee to groin blood clot diagnosed on May 8. I’d been trail running for about 2 years and had gotten to the point that I really loved it…just being outside and enjoying the setting. The first week, my leg hurt so much that I was afraid that I would never run again. And also my leg is still so swollen… It was all so disheartening. I had already recovered from Cushing’s too.
Anyway, I’m feeling a bit better and am going to train full force in a couple of weeks. I want some new veins! 🙂 Thanks for the inspiration.
❤ M
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Hi Marian, so glad you enjoyed the blog! I’m so so sorry to hear you have to deal with all of this. I hope your training is going well and that you’re on your way to making new veins! You definitely can do it, especially since you already enjoyed a love of being active and outdoors! 🙂 Keep me posted on your progress!!!
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Hi, thanks for the story. Scary but glad for your recovery and commitment. But why did it develop in the first place, and so extensively? I got a DVT quite by surprise in my leg (I don’t have any lifestyle factors and no family history) but it was “only” 18 inches long. Yours was huge! Any thoughts why it developed? Appreciate any insights you have.
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Hi Richard, I’m sorry to hear that you had a DVT yourself. Hopefully you are on the road to recovery and doing better already. My clot likely developed because of three things — I slept the entire way from CA to Thailand (sleeping while sitting and not moving your legs causes the blood to pool in your legs and develop clots), birth control (any form of estrogen can increase your risk of clotting), and Factor V Leiden (which is a genetic condition that increases clotting; 5% of Caucasians actually have this!). It was unfortunately the perfect storm of ingredients for me. Do they have any theories as to what caused your clot?
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Hi Amaris,
I have been just discovered in the last few days, that I also have the genetic condition of Factor V Leiden (Homozygote). At the beginning of April this year, suddenly felt my left leg was hearting and like a muscle was caught, at first thought should be resting a little bit, but after a week, noticed it was twice as big as my right leg, so immediatly came to my Doctor who sent me to a hospital, where I was told that there is a blood clot in the pheripheral veins.
I started to take Xeralto 15mg twice a day, and after a while moved to 20mg once a day, and still continuting.
Still need to get to my hematologist to understand how should the treatment continue (The genetic answer, came after my last visit, but there was already a suspicion for that specific disorder due to low APCR rating – 1.3)
meanwhile, I have got a little bit back to myself, I started to run (not high speed, not long distance, but still running).
Point is, I had a First vacation of snowboarding at the beginning of February this year, And it left a very good taste, enough to come back, of course that as a beginner I fell a lot, and will probably fall a lot again next time.
I am not too sure that the blood clot formed due to the snowboarding experience, I think that there is another reason for that….
From your blog, I read that Snowboarding is off the table, and I wanted to consult you regarding it-
I am from Israel, so for me Snowboarding is once a year manner, traveling for one week, and I thought if it can be possible to stop with Xarelto for that duration, of maybe use a small dose like 10mg which is taken right after a Ski day is over, and will have less impact on the next day.
Of course, should be using a good safe equipment as Helmet and other protectors.
I guess that the problem is not with the effort on the legs, but more with getting injuries during it.
I will also consult my Hematologist, on the next Visit.
The Xarelto should be stopped a day before and a day after having a Surgery, So maybe it can be stopped also for such a duration……
Would appreciate your thoughts and experienced answer regarding it,
Thanks a lot and wish you all well,
Ori
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Hi Ori,
Thanks for writing me. I’m so sorry to hear about your ordeal. As a fellow Factor V-er, it is definitely a pain and a letdown to be told you’ll have to remain on some sort of blood thinner.
I can totally understand not wanting to be limited by xarleto, but it doesn’t sound like it would be a good idea to engage in any kind of physical activity where there is a risk of hitting your head or other injury, which could prove fatal. I’m not sure about coming off the medication temporarily….I think you’re definitely right to contact your doctor first about all these concerns. I myself have not tried something like this before, but I am extremely uncoordinated and am not good at any other sports like snowboarding!
Would be interested in hearing what you end up doing. Hope your recovery continues to go well!
Best,
Amaris
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Hi Amaris,
Thank you very much!!!
So I visited my Hematologist, According to her, there is a current research which at the end, there might be a possibility for a preventive care to be reduces from Xarelto 20mg to Xarelto 10mg.
As I am currently on 20mg, I talked with her regarding an Activity like Snowboarding, She has instructed my, that for such a case, I should be taking half a dose (Split the 20mg) at the end of the Snowboarding day. That way the amount of the blood thinner in the body, will not be too high, but still will act as preventive (She told me that she gave the same instructions for another patient, who is skiing).
Must say, that I will prefer not to take the Xarelto during the vacation at all…. When it will be more concrete, I will advice her again.
I hope you continue with the running, and that everything is OK with you.
Ori
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Hi Amaris
I got a weird ‘unprovoked’ DVT in my lower right leg earlier this year, just from sitting at my desk working for long periods of time. (At least I think it was that). I’m not sure whether I had a PE as well as I wasn’t checked for that at the hospital but I was having sporadic breathing difficulties for a couple of weeks whilst the medication was kicking in so it’s a possibility. I just feel so lucky I decided to visit the doctor after a few days as my leg was getting more painful. I dread to think what might have happened if I had ignored the pain for a few days more.
Having been in perfect health prior to this I found the whole situation quite scary and upsetting, and then I saw your website and your story. Wow. I’m sorry you had that awful experience it must have been terrifying being away from home and then going on that risky flight to Tokyo to get treatment.
I also agree that running is good for the condition. Having always been a runner I couldn’t imagine not doing that anymore, luckily I have been able to continue with the half marathons and my mile pace is almost back to normal. The exercise creates smaller veins that transports the blood back taking the strain off your deep veins. Plus it makes you feel better about yourself, which is really important. I hope you eventually managed your sub 2 hour half!
Your last update here was a couple of years ago so I’m just hoping that you are well, training hard and feeling better year by year.
Very best of luck to you.
Dan
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