Running to Recover from a DVT

I’ve taken a little bit of a hiatus from blogging and sharing my experiences with deep vein thrombosis (DVT) and pulmonary embolisms (PEs), but I’m back! I’m not training as frequently as I did for the marathon, but I finished my tenth half marathon (eighth post-DVT) yesterday in Central Park — the MORE/FITNESS/SHAPE¬†Women’s Half-Marathon! ūüôā It was such a beautiful day and I’m always inspired when I’m surrounded by so many women who have trained and worked so hard.

I was also lucky to have had¬†the opportunity to share my DVT and running story with Rewire Me — an online community focusing on health and wellness.

You can check out the video here.

You¬†should also¬†look at¬†the other women in the video series — they all have very inspirational stories about never giving up.

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STOP THE CLOT.

I’m training for the NYC Marathon.

I am both excited and terrified. It will in many ways be the hardest thing I have ever done.

  1. Running 26.2 miles is really hard.
  2. Running 26.2 miles after having a severe DVT (deep vein thrombosis) and pulmonary embolisms (PEs) in both lungs is really, really hard.

But I’m determined to do it.

Although doctors initially told me I would never be able to run again, I have since run five half marathons and numerous other races. I run regularly, and I’m convinced running saves my life daily.

DVT left the veins in my left leg a scarred and clotted mess. But running has allowed my body to heal and generate new veins (collateral veins) to help meet the demands I put on it with an active lifestyle.

I am still slower than I was two years ago, but I am determined to be better than I was before.

This is where the marathon comes in.

A marathon was something I thought impossible two years ago when I was healthy. A marathon was impossible a year and a half ago when I was in the hospital. A marathon was still impossible when I signed up. A marathon is still impossible today. But by training for and running the NYC Marathon, I want to prove to myself (and hopefully to you) that anything is possible.


I also want to use my first marathon as an opportunity to spread awareness. By sharing my story, I have already been able to warn my friends and family about the signs, symptoms and dangers of a blood clot, but I want to take this further, and I’m hoping you’ll help.

More than one person dies every six minutes from a pulmonary embolism.

That’s 274 people dying each day from a blood clot.

This is more than HIV, breast cancer and motor vehicle crashes COMBINED.

These numbers are completely crazy and should not be this high. How could these numbers be reduced? Awareness. Awareness. Awareness. If more people knew how to (1) recognize the signs and symptoms of a DVT before it was too late, and (2) take simple precautions to avoid a DVT, thousands of lives could be saved each year.


LOGO-Stacked_Logo_HighRes

The National Blood Clot Alliance is one of the largest organizations working to help spread awareness of DVT and provide assistance to those who have experienced a DVT. Although its focus has in the past been on patient advocacy, it is refocusing its efforts on public awareness in 2015 and in the future.

TEAM STOP THE CLOT for the 2014 TCS New York City Marathon is raising money for the National Blood Clot Alliance to help support this goal. Each team member is running 26.2 miles to help raise funds and spread the word to STOP THE CLOT.

My hope is that one day DVT and PE will be as well-known as breast cancer, skin cancer, or AIDS. It is through the efforts of many hard-working volunteers as well as generous funding that these have become everyday words.

It would mean a great deal to me if you could help achieve this goal.

Because I am not running the NYC Marathon on a charity bib (I qualified by running 9 races + 1 volunteering job last year), any money I raise will be used exclusively to STOP THE CLOT. All funds will create awareness for the general public and hopefully prevent more stories like mine from occurring.

I also promise that if you donate to my campaign, I will RUN WITH YOUR NAME on my shirt during the race–this way, we will be running together. ūüôā No donation is too small, and any amount will help STOP THE CLOT.

PLEASE DONATE HERE.

Thank you!

Let’s take this TO INFINITY AND BEYOND!

We are not alone.

One of the things that I find has made training for the NYC Marathon more manageable is having a good team. It’s more than just having loving friends and family encouraging you every step of the way (although of course this too¬†is crucial). It means having someone by your side who is also having the same experiences.

Our NYC marathon training schedule!

Our NYC Marathon training schedule!

Lucky for me, I am not training for my marathon solo. I have a very good friend running the same training program, and she¬†struggles with the same runs each week. We keep each other accountable, and I know that if she’s tackling the training runs with her equally hectic work schedule and personal life, then I can do it as well. We can vent to each other about how we’re sore, or about how that week’s run was much harder than the rest…

…in short, it’s that feeling of community and shared experience that make the entire experience more enjoyable. I know that I’m not alone. And I know that together, we can both finish this thing.


Similarly, one of the most important things I’ve realized through my deep vein thrombosis (DVT or blood clots) recovery is the importance of community. DVT and pulmonary embolisms (PEs or blood clots that have broken off and gone into the lungs) are actually fairly common–one person dies every six minutes from blood clots, which adds up to more deaths in America than HIV, breast cancer, and car crashes combined!

But because there are so many of us, I’m slowly realizing there are actually a number of very helpful online communities to discuss treatment options, medications, fears, recurrences of blood clots, and even running tips.

When I was first hospitalized in Malaysia and Tokyo, I felt so alone. I had heard of DVT, but I honestly knew very little. I was overwhelmed and in a foreign country, and none of my friends had ever experienced a blood clot. It was all new, and I didn’t know my options or understand what was happening. And while I spent countless hours reading different medical journals or articles explaining the science behind what was happening to my body, I wish now that I’d spent more time interacting with other people who¬†had experienced¬†something similar.

Reading about other people’s experiences:

(1) educates me.

Although doctors, news, and medical journals/articles have been able to explain a great deal of what is and has happened to me, it’s been incredibly helpful to hear from others who have many more years of experience. Science is continually progressing, and I’m hopeful that treatment options will continue to expand and be perfected over time.

But there’s a lot science doesn’t know. I’ve learned there are likely more genetic clotting factors than have currently been discovered. I’ve learned that the medications that work for me now may not work in the future. I’ve learned that exercise/running certainly helps in recovery, but it’s unclear how much we can push our bodies and unclear just how much this can affect post-thrombotic syndrome (chronic pain and swelling) long-term. I’ve learned that it’s unclear why some people get post-thrombotic syndrome and others don’t.

And while a community of individual experiences cannot itself provide definitive answers, it can help broaden your general awareness of potential outcomes. Knowledge gives you the power to better manage your condition.

(2) inspires me.

More importantly, I’m inspired and constantly amazed by everyone. There were so many times I struggled–struggled to stand, struggled to walk, struggled to run. But for every struggle I felt and every bit of frustration I experienced, there are a dozen more success stories. Again, I wish I had been better aware of these communities a year ago, but even now–almost two years out–I feel motivated and inspired to see my fellow Clot Busters racing triathlons, running marathons, and doing whatever else it was they were doing before they got sick.

I encourage anyone that’s struggling to do the same. It’s so easy to feel down on yourself when you can’t do what you were once able to do, but talking to others and reading success stories made me realize that if they could do it, I could too. Very little cannot be accomplished from sheer determination and continued efforts.


Here are a few of my favorite communities–

Facebook: Running after a Pulmonary Embolism
A great community of post-PE/DVT runners who post their success stories, questions, advice and latest news. Everyone is incredibly friendly and quite responsive. This is an amazing and inspiring group of people that just won’t quit and won’t take no for an answer!

CLOT BUSTER
Roland Varga maintains an¬†Athlete of the Month post, where he shares that individual’s DVT/PE story, their recovery, their advice, and their current progress/training goals. There are over six years of monthly athletes shared on this page, and there are¬†sure to be a few that resonate with your experiences and will motivate you to keep going. He’s been kind enough to feature me for August!

Facebook: Thrombosis Support Group (Clots, DVT, PE, stroke, phlebitis, clotting)
I’m new to this group, but this is another very active community of more great people who are also recovering and learning more. Some members are able to draw on years of experience, while others are just beginning to adjust to post-thrombotic¬†life.

Daily Strength: Deep Vein Thrombosis & Pulmonary Embolism Support Group
Another community of clotters that offers support and comfort for those who are experiencing or have experienced a DVT/PE.

At the end of the day, it doesn’t really matter where you go to find your community. What’s important is realizing that you are not alone, and that your goal of getting back to — no, exceeding — where you used to be physically is possible!

How to ride a plane.

My first week of marathon training was in St. Petersburg, Russia.

Sticking with your training routine is always difficult when traveling, and especially difficult when you’re walking 10+ miles a day and all you want to do is have fun with your friends. Russians don’t have a strong outdoor running culture like we do in the US, and it’s easy¬†to assume everyone is staring at you strangely.

Luckily, Week 1¬†was filled with only short runs, and I was able to get in a couple training runs. I didn’t follow my schedule perfectly, but I’ve accepted that perfectly following my schedule will be impossible and unreasonable expectations will only lead to irrational self-loathing. A marathon is about loving and improving yourself!


But more importantly, every time I travel (or hear of anyone else traveling) long distances, I am reminded of the importance of knowing how to ride a plane to avoid deep vein thrombosis (DVT) or blood clots.

DVT often happens on long plane rides–if it’s an especially long flight, it’s difficult not to fall asleep for long hours. But when your legs are immobile for that many hours below your heart, gravity works against you, and the blood begins to pool in your legs. The blood in your legs¬†slows down and becomes more sluggish, and this can eventually lead to a blood clot in your veins. If a clot breaks off and goes into your lungs, causing a pulmonary embolism (PE),¬†it can be instantly fatal.

After the 3/11 earthquake in Fukushima, Japan, many individuals died after sleeping in their cars in the weeks following the destruction of their homes. DVT formed in their legs from hours of sleeping in an upright position.

So what can you do to prevent this? A few simple tips can help save your life:

  • Walk around on the plane every couple hours. The key is to keep your blood moving.
  • If you can’t be bothered to wake the person next to you, pump or kick your feet around so that the blood keeps moving.
  • Stay hydrated. Dehydration leads to thicker blood, which increases¬†clotting.
  • Take an aspirin. Aspirin is an anti-platelet drug, which prevents blood cells called platelets from clumping together to form a clot.
  • Wear compression stockings.¬†Compression stockings help with blood circulation in the legs. I realize¬†that this is something most people will not do (so do your best to walk around and stay hydrated!).
  • Avoid sleeping pills.¬†They only decrease your mobility and increase your chances of a DVT.

If you start to feel any discomfort in one leg after a long flight or car ride, see a doctor immediately! Symptoms of DVT can often occur in the days/weeks after long travel and may not be immediately apparent.


In front of the Hermitage Museum in St. Petersburg, Russia.

Running in Russia. In front of the Hermitage Museum in St. Petersburg.

I’m running the NYC Marathon. Here’s why.

This week marks the start of my training for the New York City Marathon. Eighteen weeks¬†of running regularly on a set schedule, slowly increasing my mileage until I hit 26.2 miles on November 2. If you’d asked me two years ago, I would have thought this was¬†crazy (half of me still does today).

But as most of you know, my life changed dramatically 22 months ago when I was diagnosed with a massive blood clot spanning from my left ankle to my heart–I had a deep vein thrombosis (DVT) and pulmonary embolisms (PEs). (See my first post here for more.)

I’m lucky I’m alive and didn’t lose my leg.

After the initial shock, the worst news I received was from the doctors, who told me that although my life would be mostly normal, I should probably come to terms with the fact that I would never run again.

Even though I had never considered myself a runner, I was devastated.

Long distance running was something I had only casually started a year earlier after a bad breakup. I had run two half marathons, but running was not a lifelong hobby. It didn’t matter. When I was told I would never run again, I was still heartbroken.

It wasn’t until Halloween 2012 that I had hope. My new doctor at Stanford was willing to work with me, and he was as aggressive in my treatment as I was determined to get better. He gave me a stent (metal vein) in my pelvis and told me that maybe I could run again. Anything was possible.

I was determined to regain use of my leg.

DVT left the veins in my left leg a scarred and clotted mess. The blood could go into my leg, but there was no pathway for the blood to leave. I couldn’t stand for more than a few minutes without excruciating pain. Additionally, because I had been bedridden for so many months, the muscles in my leg had atrophied.

So I started to go to the gym.

It was slow work, and sometimes my workouts consisted of no more than walking down my stairs and to the gym a few blocks away, but these walks slowly became five minute walks on the treadmill.

The pain was horrendous–my leg felt as though it would burst from the inside out. The pressure of blood pumping into my legs with no way to leave would become increasingly mind numbing as I walked, but because my doctor had said that even painful exercise would not further damage my leg, I kept going. (Though you should always consult a doctor before doing any painful exercise).

Soon I could slowly jog 100m on the treadmill. And then 200m. And then 400m. Each day I was able to bear the pain for a minute or two longer than the day before.

What I did not realize was that the more I ran, the more my body worked to compensate for my activity. Although I did not have use of my deep leg veins, my body created a web of new veins (collateral veins) to meet the demands I was putting on it. The harder I ran, the harder my body worked.

Six weeks after my last surgery I ran a 10K in Central Park.

Six months after I was told I would never run again I ran the Brooklyn Half.

I’ve run more than a dozen races since then, including four more half marathons.

I am still slower than I was two years ago, and it is still painful to run, but in the last year and a half, running has become a part of me.

This is where the marathon comes in.

A marathon was something I thought impossible two years ago when I was healthy. A marathon was impossible a year and a half ago when I was in the hospital. A marathon is still impossible today. But by training for and running the NYC Marathon, I want to prove to myself (and hopefully to you) that anything is possible.

I hope that you will keep me accountable and cheer me on during my 18-week journey. I’ll post weekly on this blog, sharing my progress as well as various stories and tips from my experiences with DVT (for any readers who are also afflicted with DVT and would like to learn more).

Without the support from friends and family, I would not be where I am today. Let’s take this to the next level.