Links

Center for Disease Control: Blood Clots and Travel: What You Need to Know

Johns Hopkins: How Do I Prevent Blood Clots?

Rewire Me: One Woman’s Inspirational Road to Recovery Through Running

Center for Disease Control: Personal Stories of People Living with Deep Vein Thrombosis and Pulmonary Embolism

Center for Disease Control: Do You Know about Blood Clots and Travel?

THE CLOT BUSTER features a monthly athlete who has overcome DVT/PEs.

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11 thoughts on “Links

  1. Hi Amaris!!! I just came across your blog! Congratulations on being a 2014 NYC marathon finisher! An amazing accomplishment!!

    I have FVL as well & just wondering if you are heterozygous (1 copy) or homozygous (2 copies).

    I’m also a runner & just invested in some fabulous running capris, but wondered if you recommend any other products/gear for clotting prevention. Also curious if you take baby aspirin or another form of daily blood thinner. Thank you & 1000 congrats again !!!!

    Instagram: naominomad
    Email naominomad@gmail.com

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    • Thanks Kaili! The marathon was great — one of the hardest things I’ve ever done (the last six miles!), but also such a rewarding and life changing experience. 🙂

      I am heterozygous for FVL. What are you?

      Until recently, I’ve been non-stop wearing my thigh-high compression stocking. I’ve been given the OK to take off the stocking and have developed enough collateral veins that I’m not dealing with painful swelling all the time, so I’m going to start ruining without the medical grade stocking from here on out. I’m going to start running with regular runner’s compression socks (I got mine at http://procompression.com/, but I’m sure there are many good brands out there).

      I take xarelto and a baby aspirin daily — it remains to be seen whether I’ll be on them forever or if I’ll eventually go down to just one. For now, I wear a medical bracelet in case I get in an accident, but otherwise that combination has worked great for me.

      How do your capris work for you? What’s your story? Hope the running goes well!!!

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  2. Hi Amaris!
    working at it everyday- but status quo:/ Reading the triathlon clot buster blogs for positive thoughts :-). Going to need another Amaris pep talk again soon I think… Hope you had a wonderful time in Japan and are well ! Xx

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    • Hi Jennifer, sorry to hear progress is slow. Definitely don’t get discouraged, change happens slowly and you often don’t realize how far you’ve come. Happy to chat/text whenever you’re down! 🙂 Even now I still see changes in the last six months (and training for that marathon really improved my leg dramatically)! I used to not be able to lie down on my left side without my left leg becoming uncomfortable, but I now find myself sleeping on my left side sometimes and am totally comfortable. 🙂

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  3. Thanks Amaris!
    Love to hear that you are continuing to improve! Your strength and words of encouragement help me tremendously.
    I saw this quote and thought of you ..
    ” Fall down seven times, stand up eight. ” ~ Japanese Proverb

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  4. Hi Amaris,
    Ive just come across your blog and am so happy I did. I’ve never met or been able to relate to anyone about this problem before until I came across fightdvt.
    I was only 15 when I had formed my DVT. It was one of the most challenging things to go through and it only made it worse still being in high school. People would ask why my left leg was much bigger than my right and I could no longer play the sports I enjoyed.
    You cant help but ask yourself “why me?” Now, 5 years later I still have a very hard time with pain and swelling due to scar tissue. I guess my question to you is how did you push through the pain? I get so frustrated with myself and having this problem seems to un motivate me even more.
    I would love to get some tips and hear more about your experience.
    Thank you for creating this page and you truly are a strong willed, motivated individual. I know the pain you feel and to accomplish what you have is amazing.
    kind regards,
    Lexy

    Like

    • Hi Lexy,

      Thanks so much for reaching out. I’m so sorry to hear that you’ve had to go through something so traumatizing at such a young age! it must have been so stressful and it must still be incredibly frustrating to be dealing with it five years out. High school is hard enough without health problems too!

      I definitely also had my occasional moments of “why me??” When I was in the hospital I felt like I kept getting more and more bad news, like to the point where it was almost comical — how much more could possibly go wrong? I realized I had a choice, I could either be miserable and a cripple, or make the best of it and fight back and potentially be less of a cripple. I’d give myself an hour to be completely depressed and cry and sulk and be the most pathetic version of myself, and then I’d open the curtains, force myself into my wheelchair, and make the best of my time stuck inside. So definitely don’t be too hard on yourself. Let yourself sulk because what happened really REALLY sucks!

      I want to preface my next piece of advice by making it clear that I’m not a doctor, and before you do anything, you should definitely check that it’s okay to do all of this medically first!! I started my recovery barely able to walk at all, but I was determined to walk again. At this point I’d been told I’d never run again, but I feel like I interpreted this as more of a challenge than an actual reality. I started going to the gym every single day, and was a pretty sad sight as I hobbled about in my crutches. I’d do the bicycle, try to walk on the treadmill, etc, but then I started talking to a physical trainer who saw me and decided he wanted to help me figure out how to achieve my goals.

      With all of the scar tissue in my veins, blood could go in my leg, but it couldn’t leave. The problem became exponentially worse when I was running or walking because I was also fighting gravity pushing more blood into my leg as well. I started doing the rowing machine because it would increase my heart rate, but at least I wasn’t fighting gravity. It was definitely hard and painful at first, but I would push through the pain and keep going. My doctor had told me there was no further damage I could do to my leg, and despite what it might have felt like, my veins were not going to explode from all the pressure! And so…I kept going and going and pushing myself. Eventually I started working on the treadmill, and yes, it felt INCREDIBLY painful, but I just kept going. I kept making myself run a little more each day and eventually the pain became less and less.

      This is because my body started to compensate by creating NEW veins, called collateral veins. By creating a web of smaller veins to make up for the deep veins that I had permanently lost to scar tissue, I was suddenly on the road to recovery.

      I also wore thigh high compression stockings every single day for two years. Originally it was to combat post thrombotic syndrome, but new research shows that compression stockings do not have any effect on whether you develop PTS. I do think they helped me immensely in that they allowed me to lead a more active lifestyle. The compression stocking helped me run longer and harder by pushing down the swelling, which allowed me to push myself harder.

      It probably took a year before running stopped being painful, and maybe two years and training for a marathon before the swelling stopped actively weighing me down. My leg still does get a little swollen when I run or stand too long, but it’s a million times better and barely noticeable now.

      Unfortunately there was no easy way for me to push through the pain. At the time I didn’t even know it would help, but I knew for sure I was absolutely unwilling to accept the current state of affairs. So I pushed through it. It took a lot of hard work and daily determination, but I know you can get there too! Just don’t give up. It definitely sucks that this is the hand you’ve been dealt in life, but you can let it get you down, or you can beat it!

      Are you located in the US? How does your leg affect your daily life? Are you in college now? Definitely feel free to ask me any other questions you might have!

      Amaris

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  5. Hi Amaris,
    thank you for the reply. I appreciate the words of advice!
    I am currently living in London, England as an Au Pair but originally from Canada. Its sort of like a gap year before I head back to school! The issue I have with my leg now mostly is discomfort or pain and slight swelling when doing physical activity! Running always seems to be the most painful but I want to give it a better try and stick with it!
    You inspired me to share my story and raise money for The National Blood Clot Alliance. I’ve written an article and its up on crowdrise.com! If you would like to check it out the link is https://www.crowdrise.com/bloodclotawarenessmonth/fundraiser/lexywilson .
    Have a good day,

    Lexy 🙂

    Like

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