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! 🙂 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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The marathon is your reward.

Exhausted and happy -- two years after my DVT (deep vein thrombosis), I finished my first marathon, the TCS NYC Marathon! :)

Exhausted and happy — two years after my DVT (deep vein thrombosis), I finished my first marathon, the TCS NYC Marathon! 🙂

I did it. I successfully ran my first marathon.They say the marathon is your reward — that after the months of hard work and hours of running, the first time you run 26.2 miles is your reward to yourself. Two years ago, the idea that 26.2 miles could ever be a reward seemed crazy. But they were right.

The race itself was one day, but it was a two year journey that got me here — a deep vein thrombosis (DVT or blood clots) and bilateral pulmonary embolism (PEs) diagnosis that left me fighting for life and limb, a doctor’s devastating conclusion that running would no longer be in my future, and a pure stubbornness that left me with a simple challenge: If they say I can’ t run, I’ll just have to run the marathon.

The journey was not physically or mentally an easy one (see my story here). Physically, I struggled to even walk more than a block or two. Mentally, I’d never run more than a half marathon in good health, and the idea of doubling that distance in poor health seemed impossible. But I pushed forward anyway.

Over weeks of training, patience (or more likely, impatience and a desire to just keep going despite the pain) paid off. My body stepped up to the challenge. I created a web of new collateral veins in my leg to provide better blood flow out of my leg, and I was able to run further and in less pain. By 2013, I was well on my way to completing the New York Road Runners 9+1 program for guaranteed admission into the TCS NYC Marathon and I knew I had no choice but to go all the way.

But telling all your friends and family (and even repeatedly telling yourself!) that you’re going to run the marathon is different from truly and internally knowing you will successfully run the marathon.

This is what made my marathon journey truly special. My 18-week training plan was about more than becoming physically ready for 26.2 miles, but also about becoming mentally convinced I was ready.

Deep down when you sign up for your first marathon, I think everyone has a little fear that maybe it’s impossible. We’ve all been repeatedly told that it’s possible — that with discipline and training, pretty much anyone can get through it. But I think that even if you intellectually know this, it’s not the same as walking into marathon day and knowing you can.

When we first started the 18-week training plan, November 2 seemed like an eternity away. We slogged through the training runs, and each week’s long run seemed more daunting than the previous. But at a certain point in the training (I think when we hit mile 18), I realized I could do this. The long runs were still time consuming, but I knew I could get through them.

This breakthrough makes all the difference.

The certainty and confidence of “Yes, I can run this” is what makes marathon day so rewarding and so much fun.

Hard earned -- the 2014 TCS NYC Marathon medal.

Hard earned — the 2014 TCS NYC Marathon medal.

There’s absolutely nothing like the NYC Marathon — the crowds have the energy of the entire city, the course is beautiful, and you can feel your hard work paying off. No doubt, the marathon certainly challenged me — the winds were out of control, I drank too much Gatorade and felt nauseous for parts of it, the “wall” at mile 19.5 hit me hard in the Bronx just as the crowds thinned, but not once did I think I could not do this.

When I finally crossed the finish line in Central Park, depleted of all my adrenaline and endorphins, covered in salt from evaporated sweat, and in more pain than I had planned for, I smiled and cried. It took 24 hours for the shock to wear off, but I now have the eternal satisfaction of knowing, “Yes I can.”

Thank you everyone for all your love and support–this journey would not have been possible without you!


I’m also including a more casual recap of the marathon. 🙂

After two years of build up, it was hard to believe marathon Sunday had actually arrived. We took Friday off to go to the marathon expo so we wouldn’t be in a rush and mentally prepared for an amazing weekend. The crowds were amazing and the energy was incredible–we were surrounded by people of all shapes, sizes, colors and ages, and all of us were here to run.

Get Your New York On at the TCS NYC Marathon Expo.

Get Your New York On at the NYC Marathon Expo.

Race to the finish of the marathon!

Race to the finish of the marathon!

 

 

 

 

 

 

 

 

 

A huge part of this race was raising money to help support STOP THE CLOT for the National Blood Clot Alliance — I am so lucky to have so much support from so many friends. I carried their names with me every step of my 26.2 mile journey.

So lucky to have so many friends donate to the National Blood Clot Alliance! #StopTheClot

So lucky to have so many friends donate to the National Blood Clot Alliance! #StopTheClot

Festive marathon nails. :)

Festive marathon nails. 🙂

 

 

 

 

 

 

 

 

 

 

Getting to the start of the race was an adventure in and of itself — we woke up early to catch the ferry to Staten Island, where rows of buses waited for arrival. Once there, we were shuttled to the start of the race. NYRR had set up a home base for the runners with food, toilets and lots of cheer. After that it was a waiting game, but luckily we didn’t have to wait more than 30 minutes in the cold.

Bundled up on the Staten Island Ferry.

Bundled up on the Staten Island Ferry.

Pre-marathon excitement and jitters.

Pre-marathon excitement and jitters.

 

 

 

 

 

 

 

 

 

BANG! The gun went off for each wave of the race, and when we finally started it felt surreal. With New York, New York at top volume, I could not have imagined a better start.

Ready to go in our corral.

Ready to go in our corral.

New York, New York, and ready to run!

New York, New York, and ready to run!

 

 

 

 

 

 

 

 

 

 

The Verrazano Bridge. Wow. The weather was unfortunately one of the windiest in marathon history. So windy that the wheelchair competition had to start after the bridge, and even the elite runners were significantly slower than in previous races. We started the race at a slower pace, but the winds were so strong that we kept running into each other and other runners. It was an almost comical bonding experience as all our fellow marathoners struggled to just keep moving in a straight line.

So happy to see everyone in Brooklyn.

So happy to see everyone in Brooklyn.

Nothing but joy.

Nothing but joy.

Meanwhile…my friends and family were rallying in Brooklyn. The crowds were probably my favorite part of the entire experience, and the cheering fans and signs give you the energy and motivation to keep going. When I finally made it to Brooklyn, I could not have been happier. I was feeling strong and having so much fun running through the city. Seeing my friends and family was perfect.

So much support.

So much support.

Even more Stop the Clot love.

Even more Stop the Clot love.

 

 

 

 

 

 

 

 

 

The race took us through more of Brooklyn and then a tiny portion of Queens before we ran over the bridge into Manhattan. After all of the crowds, it was a strangely peaceful stretch, with nothing more than the steady sound of running feet to keep you going.

Quiet into Manhattan.

Quiet into Manhattan.

Going up First Avenue with the crowds screaming.

Going up First Avenue with the crowds screaming.

 

Once in Manhattan, the crowds on First Avenue were roaring. It was hard not to feel like a celebrity, especially because I had name written across my shirt. Also I had some of the best signs in the race. 🙂

Don't Fall. Daft Girl. Don't Poop.

Don’t Fall. Daft Girl. Don’t Poop.

Running everywhere.

Running everywhere.

I was about 19.5 miles through the race when I finally hit The Wall. This is the point in the race where the crowds have thinned, and you are making your way further and further from the finish line (leaving Manhattan to go to up to the Bronx). With more than 10K left, an hour plus of running felt like an eternity. I knew that I would finish, but I also wasn’t sure how much of a toll it would take to get me there. When I finally made it to Central Park, I knew I was in the final stretch and just had to keep pushing.

The final stretch in Central Park.

The final stretch in Central Park.

The Wall is real.

The Wall is real.

 

 

 

 

 

 

 

 

 

The last few miles were a struggle and it was hard to give my family more than a thumb’s up when I ran by. When I finally crossed the finished line I was filled with both enormous pride and enormous pain. I somehow hadn’t realized how cold it was until I crossed the finish line!

Marathoners!

Marathoners!

Officially complete. :)

Officially complete. 🙂

 

 

 

 

 

 

 

 

 

The rest of the week was filled with celebrations, food and recovery!

Celebrating with Times Square in the background.

Freezing cold, but celebrating inside.

Tiffany's special edition 2014 TCS NYC Marathon necklace.

Tiffany’s special edition 2014 TCS NYC Marathon necklace.

 

 

 

 

 

 

 

 

 

 

We also made it onto both Buzzfeed and the NYTimes!

Buzzfeed: Best 2014 NYC Marathon signs.

Buzzfeed approved: Hands down, the best 2014 NYC Marathon cheersquad.

New York Times 2014 finisher at 4:50:17.

New York Times 2014 finisher at 4:50:17.

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. 🙂 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!

I wear clunky jewelry so I don’t bleed to death.

Less than 100 days until the NYC Marathon! It’s coming up quickly.

The last week of training was a bit of a mess—I ended up having some of the worst food poisoning of my life and my training was somewhat derailed.

But the important thing is that I still managed to get in my long run on Friday morning. From everyone I’ve talked to, this is the weekly run that is absolutely essential to a successful race day. Life and work can sometimes mess up your plans to regularly run during the week, but the long run must happen no matter what. No excuses.

With plans over the next few weekends, I’m trying to adjust my schedule to do my long run on Fridays before work. It’s definitely rough while I’m doing it, but it makes the entire weekend that much better once it’s out of the way!


Although running is keeping me healthy and improving my leg, I’m also constantly running about in my life. My days are filled with work, friends, travel, etc. that always keep me on the go–but despite being busy, I am a strong proponent of taking precautions and being safe where you can.

Because my deep vein thrombosis (DVT or blood clots) was so severe, I’ve been on a whole slew of medications to thin my blood. I’m currently taking xarelto (aka rivaroxaban—I’m a huge fan, and happy to discuss with anyone in more detail) and a baby aspirin daily. The xarelto is an anticoagulant (helps to lengthen the time it takes for my blood to clot) and the aspirin is an antiplatelet (helps to prevent my blood cells from clumping together to form a blood clot).

In short, because the veins in my leg are so damaged, I am highly susceptible to developing another DVT. And as with all DVT, if a part of the clot breaks off and goes to my heart and lungs, I will develop a pulmonary embolism (PE). PEs can be instantly fatal because they can cut off blood flow into the lungs. I had several PEs when I was first diagnosed, but was lucky they were small and not fatal.

Clearly this is not an acceptable risk. I therefore take blood thinners daily, and may well be on them for the rest of my life.

But what are the risks?

While the blood thinners help prevent future blood clots and help save my life, they also prevent my blood from clotting when I’m injured.

What does this mean?

It definitely doesn’t help that I’m a klutz, but I’ve stepped on glass and bled everywhere for close to an hour. I’ve walked into a door and given myself a concussion. I’ve bumped into tables and everyday objects and ended up with massive bruises. I’ve had bloody noses in dry weather that last a completely unreasonable amount of time.

And for the most part, this isn’t a big deal. But it does mean I’m banned from a lot of physical activities. I’m not allowed to play contact sports. I’m never allowed to ski or snowboard. I’m still trying to figure out if I can SCUBA. And I’d be an idiot for playing paintball. Lucky for me, I’ve never been coordinated enough to do most sports—it’s another reason why running is so important to me. Running is no-contact and requires nothing more than putting one foot in front of the other.

The greatest risk of being on blood thinners is mass trauma. What happens if I get hit by a car? Or something falls out of a window? Or I fall off a balcony? It’s in the freak accidents that there is the most danger. All of these are accidents that would endanger anyone, but in my case I will not stop bleeding.

Unfortunately there is currently no known antidote for xarelto (some blood thinners, such as warfarin/coumadin have a known antidote, but require much more daily upkeep and effort). This may change soon, but for now the risk of uncontrollable bleeding is even more serious. It is therefore very important that should I get in an accident, the EMT or other healthcare professional immediately know my medications and condition.

Amaris White DVT PE FACTOR V ON XARELTO ASA (aspirin) DAD 925-XXX-XXXX

Amaris White
DVT PE FACTOR V
ON XARELTO ASA (aspirin)
DAD 925-XXX-XXXX

That’s why I wear a medical bracelet—it lists my name, conditions, medications and emergency contact. I wear it all the time and never take it off—going out, showering, exercising, etc. Odds are it will never be used, but there’s a peace of mind knowing that I’m prepared for the worst case scenario.

You can buy the same bracelet here.

I previously wore this medical bracelet, but was worried it wouldn't catch a medical professional's eye in an emergency.

I previously wore this medical bracelet, but was worried it wouldn’t catch a medical professional’s eye in an emergency.

I had previously worn a nicer looking bracelet, but it looked too similar to the LIVESTRONG bracelets that so many people wear variations of today, and a former EMT friend of mine let me know that he would not recognize it to be a medical alert bracelet.

I got both my bracelets at Walgreens.com.

And so I’m sticking to the clunky big metal bracelet with the giant red medical alert notice. It’s not pretty, but in an emergency situation where every second counts, you want it to be easily recognizable.

Hopefully (probably) I will never need it. For those of you who are also on blood thinners, I highly recommend you wear one as well. We’ve already cheated death once, and there’s no reason for us to do it again—better safe than sorry!

85% of Air Travel DVT Victims are Athletes.

On Thursday nights (work permitting!) we try to make it to Central Park for our weekly running class with New York Road Runners. It’s intense and often reminds me of high school track—lots of drills and exercises, always pushing us to our max.

Each week is a surprise—sprints? hills? half-mile intervals? Each week we push ourselves further than we would have on our own. Each week we run until we feel like we can’t go anymore, and then we run a little more.

I’m always dead last in this class (not an exaggeration), but I never regret going. Through the pain and heaving breathing, I know I’m getting a little stronger and a little faster. I know my heart is becoming more efficient at pumping oxygen through my body, and that my body is making new veins and clearing the clots in the old.

But what I hadn’t realized until recently is that although running is saving my life, long-distance running can also increases your odds of blood clots.


When most people think of deep vein thrombosis (DVT or blood clots), they picture the elderly or overweight. It’s hard to imagine the young or active getting sick or suddenly dying.

But what about tennis star Serena Williams (29 years)? Hockey player Adam McQuaid (26 years)? Professional golfer Joey Sindelair (51 years)? They all had blood clots and pulmonary embolisms and are lucky to be alive today.

Blood clots can happen to anyone. That’s why it’s important to know the risk factors and warning signs so you can avoid a clot yourself.

In fact, the English National Football Team takes this issue so seriously that for the last two World Cup games, the players have been fitted with compression stockings for their flights.

What many people don’t realize is that runners and other endurance athletes (and not just professionals!) are particularly prone to getting DVT. Although they combat some of the risk factors by being active and in generally good health, according to AirHealth.org, 85% of air travel DVT victims are athletic, endurance athletes like marathoners. 83% of athlete victims on planes are under 60 years.

So why is this? Endurance runners and athletes have their own set of risk factors in addition to those that apply generally.*

  1. Dehydration. Prolonged periods of exercise can lead to dehydration, which leads to thicker blood. When your blood is thicker, it is more likely to clot. Caffeine and alcohol are also diuretics that can in turn thicken your blood.
  2. Lower Heart Rate. A lower heart rate means your blood is moving through your body at a slower rate. When your blood moves slowly, it is more likely to clot.
  3. Soreness and Injury. When your body experiences trauma, it may begin to form a clot at the site. Additionally, if you break a bone or strain a muscle, you may be required to wear a brace or a cast—these limit your mobility, and increase your chance of clotting.
  4. Travel. Many athletes travel for games and races. If you travel long distances and are immobile in a car or plane, your blood can pool in your legs and form a clot.
  5. Physical Abnormalities. There are also some physiological abnormalities that compress one of the deep veins and with repeated trauma/use, can eventually lead to a DVT. See more about Thoracic Outlet Obstruction for DVT in the arm, or May-Thurner Syndrome for DVT in the left leg. 

So what can you do?

Stay HYDRATED. 

Stay ACTIVE. 

Wear COMPRESSION STOCKINGS on planes.

LISTEN to your body. If something feels off, see your physician.

 

*There are other risk factors that may apply, but there have not been enough studies to determine their significance and/or correlation.

What I wish I’d known.

I successfully completed all my runs this week, and it’s clear this summer humidity is going to be a real challenge–but one that I’m willing to tackle!

I’ve always been a fan of summer, and I will take the worst of NYC heat and humidity over winter any day. But even so, it makes it very difficult to run.

I wear a compression stocking on my left leg that goes up to my thigh. As far as I know, it’s something I’ll need to wear for the rest of my life. It’s basically a very tight sock that combats swelling by helping keep the blood from pooling in my leg (blood goes in just fine, but because my veins are clogged, it’s difficult for the blood to leave).

Unfortunately, the compression stocking makes it hard for my leg to breathe. The stocking is so tight, I can’t sweat out of that leg, and I quickly overheat. The humidity is brutal. I hope that by powering through, these runs will eventually get easier. And when the November NYC Marathon rolls around, I’ll have some extra preparation!


Even though my initial diagnosis of the deep vein thrombosis (DVT) is nearly two years behind me, it’s still difficult to deal with the consequences of the clot in my leg being permanent.

I don’t believe in living life by saying “If only…” or “I wish I’d known…,” but if I had known one thing, it would have completely changed my life and leg.

A DVT will become permanent scar tissue if it is not properly dealt with in the first few weeks. 

Most of the time, this is not a problem. Doctors use two main treatments to treat a DVT.

  1. Blood thinners: In most cases, blood clots are small (but deadly) and can be treated with anticoagulants (blood thinners). These drugs increase the amount of time it takes for a blood clot to form and allow your body to naturally take care of the existing clot.
  2. Clot-busters: In cases of more extreme DVT, the body alone is unable to clear the clot by itself. A clot-busting drug can be injected directly into the blood stream or the clot to help the body “melt” the clot away at a much faster rate.

Unfortunately, in my case, I had the perfect storm of problems. My DVT was extremely severe (phlegamasia cerulea dolens) and went from my ankle to my heart. It was so bad my foot was turning blue. I had a 50% chance of dying or losing my leg. I also got sick in Malaysia, meaning I did not have access to modern healthcare.

The doctors in Malaysia were satisfied with treating me exclusively with a blood thinner (xarelto, which I’m on today). Despite the severity of my DVT, they opted to go with the standard treatment of blood thinners—only effective in less extreme cases—and to let my body essentially take care of the clot itself.

It’s safe to say, had I stayed in Malaysia, I’d either be dead or short a left leg. There is no way my body could have tackled a four-foot long blood clot on its own.

After a couple nights, I flew to Tokyo to seek more advanced treatment. The doctors in Tokyo were much more prepared to handle a DVT of my severity, and within a couple hours of landing in Tokyo, I was in the operating room receiving a filter to catch blood clots before they could enter my heart lungs (inferior vena cava filter/IVC filter).

They chose to treat my DVT by hooking me up to an IV and filling my blood stream with the clot-busting drugs (urokinase). Although they considered injecting the clot-busting drug directly into my clot (catheter directed thrombolysis), there is a risk of severe and fatal bleeding. This was not a common procedure in Japan, and they decided to play it safe.

It would take longer, but my body would take care of the clot over the next few months with the help of the clot-busting drug. Patience would pay off.

I spent a month in the hospital in Tokyo. I was not allowed to go outside, I could not walk, and I was hooked up to an IV. The clot-busting drug was slowly but surely effective. My weekly MRIs showed the clots in my lungs (pulmonary embolisms) and in my lower leg and mid-section “melting” away, and the clot that had extended from my ankle to my heart gradually became shorter.

Unfortunately, the clot-busting medication never got a chance to “melt” the vast majority of my clot. My upper calves, my thigh, my pelvis—none of these were exposed to the medication because blood flow in the area was so poor. Only the peripheral clots were exposed to the clot-busting drug in my blood stream. The majority of my DVT was left untreated.

Five weeks after my initial diagnosis, I flew back to New York to finish treatment. It was here that I learned a DVT will become permanent scar tissue if it is not properly dealt with in the first few weeks.

What I hadn’t known was that I had been sitting in various hospitals in Asia, waiting patiently, and quietly allowing all of my blood clots to become permanent scar tissue. I had passively sat around, and with each passing day, I ensured a lifelong disability with lifelong poor circulation.

If only I had known.

Getting catheter directed thombolysis in New York. Unfortunately the treatment would be too late.

Getting catheter directed thrombolysis in New York. Unfortunately the treatment would be too late.

It had already been five weeks, but the doctors in New York tried injecting the clot-busting drugs (rTPA) directly into my leg (catheter directed thrombolysis). Small portions of the clot (likely new clots resulting from my poor circulation) “melted” away, but ultimately it was ineffective.

The deep veins in my leg were left permanently scarred and blocked.

It’s easy to go back and wonder about how things would be different if my DVT had been less severe, if I had gotten sick in America, if I’d only gone back to New York earlier, or if I’d known I had a limited window of time…

Had I known, I would have flown back to NYC as soon as I had the IVC filter (to catch blood clots) inserted in Tokyo.

Had I known, I would have asked for more aggressive treatment and catheter directed thrombolysis.

Had I known, I would have busted the clots before they became permanent.

…but ultimately, this does no good. It might have been a lot worse. I’m alive, I’m running, and I don’t plan on letting DVT stop me from anything.

Please be mindful of your treatment—you only have a limited time to bust the clot before it becomes permanent. Consult your doctor and get a second and third opinion.

No one cares more about your well-being and treatment than you.