Author Archives: Amaris

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.

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

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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.

A year ago I almost died.

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I was 25-years old and staring death in the face. My leg hurt and I had difficulty walking, but I otherwise felt and looked healthy. No one would have guessed that I could easily drop dead at a second’s notice. I was young and in relatively good shape. In the past year, I’d run two half-marathons and I was now in the middle of a month-long backpacking trip through Southeast Asia with my friends.

But I somehow ended up on a seven-hour flight from Malaysia to Tokyo, alone, and seriously wondering if I would make it to my 26th birthday the following week. Three days earlier, I had been diagnosed with deep vein thrombosis (DVT) in Kuala Lumpur, nearly ten thousand miles away from home, and although I didn’t know it, I had already developed pulmonary embolisms (PEs).

I want to tell my story in the hopes that you will learn the signs of this potentially fatal condition. It is often left undiagnosed and is incredibly serious. DVT/PEs can affect and kill almost anyone in any age group and in any state of health. You may have heard of NBC’s David Bloom, 39, who died unexpectedly while reporting in Iraq. Or you may have heard of teenagers dying unexpectedly after playing video games for days without stopping. Or you may have heard that Hilary Clinton suffered her own DVT scare in 1998. There are countless stories.

My hope is that if you learn the risk factors and symptoms, you, your family, and your friends will be able to avoid a similar debacle.

—

DVT occurs when a blood clot develops in a vein and begins to block the blood flow back to your heart. It often occurs in the lower leg, thigh or pelvis, but can also develop in the arm.

What makes a DVT so dangerous is that a part of this clot can break off and travel through the vein, through the heart and into the lungs. The DVT then becomes a PE, which can stop blood from reaching the lungs—if the clot is big enough, you die.

This scan of my leg shows that my left leg (right in this image) is swollen.

This scan of my leg shows that my left leg (right in this image) is swollen.

In most cases, the DVT is small and limited to one area. Regardless, a blood clot of any size can break off, and if the piece is large enough, it can be deadly.

In my case, the DVT was severe. My entire left leg, through my pelvis, and nearly all the way to my heart was one enormous blood clot. In half of the cases that are this serious, the patient either dies or loses the leg.

Because my prognosis was so grave, and because the medical care in Malaysia was insufficient, I flew to Tokyo, despite the risks, on the recommendation of my friend’s father (an ER doctor). By the time I landed in Tokyo and was rushed into the ICU and surgery, they discovered that I already had several PEs. I had been lucky they were small.

—

Each year DVT/PEs kill more than 300,000 people in the U.S.—more than HIV and breast cancer combined. However, DVT can be treated and PEs prevented if discovered early.

Hanging out in the hostel. Unable to walk, but still had no idea what was wrong.

Hanging out in the hostel. Unable to walk, but it would be days before I knew what was wrong.

We had been traveling through Southeast Asia for three weeks, and I had been having lower back pain for about a week. I didn’t think much of it and chalked it off to the uncomfortable beds in our cheap hostels. On our last night in Kuala Lumpur, my left leg started to swell unexpectedly. Within a couple hours the pain and swelling were so severe that I could no longer walk. My leg became discolored and for the next two days my roommate and I went to different hospitals in order to get a diagnosis—all the while my leg became progressively darker, and the pain increasingly crippling. Although DVT symptoms are commonly recognized by American doctors, I had a hard time getting answers in Malaysia. At one point one of the doctors told me to go back to my country to get my leg fixed. Eventually, I was able to convince one of the doctors to give me a scan after my foot started to turn blue, revealing that I had a DVT.

It is important to know the signs of a DVT so that you can seek medical help immediately:

  • Swelling
  • Pain
  • Tenderness
  • Discoloration or redness of skin
  • Warm skin
picstitch

My left leg (right in this image) was starting to turn blue when the doctor finally agreed to give me a scan.

My left leg was swollen, darker and in excruciating pain.

My left leg was swollen, darker and in excruciating pain.

You can also develop a PE without showing DVT symptoms. You should go to the hospital immediately if you have these symptoms:

  • Difficulty breathing
  • Faster than normal or irregular heart beat
  • Chest pain or discomfort, which usually worsens with a deep breath or coughing
  • Coughing up blood
  • Very low blood pressure, lightheadedness, or fainting

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What makes this so scary is that half the time, people show no symptoms of a DVT at all. It is therefore important to know what causes a DVT, and also know what you can do to prevent a DVT from happening in the first place.

Anyone can have a DVT, but your odds increase with each risk factor present:

  • Sitting for long periods without moving (long plane flights and car rides)
  • Birth control pills (or other increases in estrogen, including pregnancy and HRT)
  • Smoking
  • Surgery
  • Obesity
  • Cancer
  • Heart and lung disease
  • Genetic clotting disorders
  • Age > 40
  • Previous history of DVT/PE in you or your family
But I would spend another 6 weeks in a wheelchair. And it would be another 4 months before I could walk more than a few blocks at a time.

I looked OK. But I would spend another 6 weeks in a wheelchair. And it would be another 4 months before I could walk more than a few blocks.

It is likely that I had been a walking time bomb for three weeks, and could have died at any given moment during our trip. I had flown to Thailand at the end of July and subsequently sat through three long flights to Bangkok. I was exhausted and dehydrated from a weekend of celebrating the end of the bar exam and I slept the entirety of each plane ride, walking only to transfer in between flights.

I later found out that I had two other risk factors, which greatly increased my odds of developing a DVT—I was on birth control and have a genetic condition called Factor V Leiden, which makes my blood thicker than the average person (1 in 20 Caucasians has this). It is likely that my clot started out small and grew larger as more and more of my blood flow became blocked, which is why my DVT was so extensive by the time I finally started showing symptoms.

—

Being abroad complicated my situation dramatically. I did not receive treatment that was aggressive enough and as a result, I will have to live with my DVT as a lifelong disability. I have an 8-inch stent (metal vein) in my pelvis, have completely lost my deep left thigh vein because the blood clot is now permanent scar tissue, am on an impressive arsenal of blood thinners, and am forced to wear a full-length compression stocking on my left leg (very trendy fashion statement) to help prevent the blood from pooling.

I spent a total of 6 weeks in 4 hospitals around the globe, spent 3 weeks hooked up to an IV, and have had 7 surgeries (and counting). Exactly a year ago I could not walk. Nine months ago I was told that I would have to accept that I would never run long distances again.

I say all this to those of you who have experienced a DVT. Your body is an incredible machine, and it can recover, even if your DVT is as severe as mine. After pushing my body to its limits—going to the gym regularly, engaging in strength training, and just running through the excruciating levels of pain—I can run again. I completed my first post-legscapade half marathon in May and will run another this October. Next up, I’ll be training to run the November 2014 NYC marathon.

Although I have worked hard to build my body back to the level it is now, I also recognize that there was an enormous amount of luck that played a role in my still being here today. But you don’t need luck to prevent a DVT—you just need to remember simple preventative tips. Before a long flight, take an aspirin. Make sure to move around during the flight. Stay hydrated. The same goes for a long car ride or any situation where you will be sitting for a long period of time. My story would have turned out differently had I known these things. Don’t let the same happen to you.

I’m running the NYC Marathon to help STOP THE CLOT for the National Blood Clot Alliance. If you’d like to help, please donate HERE. Thank you!