Monthly Archives: July 2014

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

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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.

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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.

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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.

How to ride a plane.

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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.