MY DVT Story

Diagnosis: August 26, 2012

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 (phlegmasia cerulea dolens). 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

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). I could not walk and 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 have run eleven half marathons and countless shorter races since my diagnosis and will continue to keep running. I also managed to run my first marathon, 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.

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14 thoughts on “MY DVT Story

  1. Hey, have you ever looked into having that permanent clot in your vein removed. They have new procedures that can remove that clot and restore blood flow. You can do a Google search on DR. Garcia at Christina Care in New Jersey! He can go in and remove hardened clots, place a stent in the vein, and restore blood flow.

    Your story is very inspiring. I had my DVT two years ago. I went misdiagnosed for many months due to the fact that I thought I had a pulled muscle. As a result, I have inflammation in some of my veins and narrowing of the lumen. Although all of my chronic clots have cleared out, my leg is in extremely bad shape. If I walk for more than 30 minutes at a faster pace, I am limping and in pain for the rest of that day, and for several days after. I don’t know how you rehabbed your leg enough to be able to run again, but I commend you for doing so.

    Also, my clot was a string of clots all the way up to my pelvis. It took more than two years for them to clear out, but all of them eventually cleared out. Chances are your occluded vein has made substantial progress since your doctors told you it would be permanent. Did they test you for any genetic clotting factors? I’m guessing that since your clot was in your left leg and so extensive, that you might suffer from May Turner Syndrome? Any how, I hope you are continuing to improve. Please keep us posted on your recovery.

    Sincerely,

    A Fellow DVT Survivor!

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  2. I misspelled May Thurner Syndrome. Sorry about that. I also wanted to add that I was in bad shape when I finally went to the emergency room. I was literally dragging my leg across the floor like a dead piece of wood. When I as released from the ICU, I literally couldn’t walk from the third floor of the hospital to the lobby on my own. I had to have a nurse twice my age wheel me out in a wheel chair. It made me feel so helpless and alone. I also had a large saddle PE. My lungs were not in that great a shape. But like you, I survived, and I’m grateful to be alive. I wish there was a better way to get the word out about DVT/PE. If I knew how serious a blood clot was, I would have never walked around for as long as I did under the false assumption that all I had was a sprained ankle. I think if I would have been treated sooner, and in a more aggressive manner, I would not be suffering from Post Thrombotic Syndrome.

    Sincerely,

    A Fellow DVT Survivor!

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    • Thanks for you comments, Jeremy! Always happy to hear from a fellow DVT survivor. 🙂

      I have considered having the permanent clot in my vein removed. I actually live in New York, so I’ll look into Dr. Garcia and his procedures. I actually had total blockage in my pelvic (iliac) vein as well, and my doctor in California gave me a stent to help open the blood flow–that’s been a huge success, but the problem is that the vein in my thigh (femoral) is smaller and there is a concern that if a stent is put in, it could collapse and be stuck that way permanently. I had been told until your comment that it was impossible to remove the scar tissue because if you tried to burrow through, you ran the risk of irritating the injury even more and creating even more scar tissue. Am really interested in reading more about what makes Dr. Garcia’s treatment so innovative and different!

      I’m so sorry to hear about your leg. It sounds like you have some pretty severe post-thrombotic syndrome. From what I understand, a lot of this pain is caused by the fact that our valves are complete damaged and so there is no longer a good pumping system to help get the blood back up out of our leg (working against gravity). I definitely don’t want you to give up though! Honestly, when I started walking again I was in SO MUCH PAIN. But I just went to the gym every day and pushed through the pain. I was told I couldn’t do further damage to my leg/veins by being physically active, so I kept on going, even when it felt like my leg would just EXPLODE all over the treadmill. Over time, I think my body realized I’m completley crazy and compensated by making additional small veins (collateral veins) that are now able to make me run again. I’m also able to go without a compression stocking for much longer.

      Speaking of which….do you wear a compression stocking? It’s actually REALLY important in aiding our recovery. I get the highest grade of compression and wear a sock that goes all the way up to the top of my thigh. It squeezes my leg very tight so that the blood flow is encouraged out of my leg. I highly highly recommend you start wearing them ALL the time (except to shower and sleep, I even wear mine at the pool/beach).

      I don’t have May Thurner (they thought I might since the clot was my entire left leg). I actually have Factor V, was on birth control and slept on a long flight to Thailand (the perfect bad luck storm).

      And I’m so sorry to hear about your experience at the hospital–I can definitely relate. I was indoors and in a wheelchair for an entire month in a foreign country and it was perhaps one of the most depressing and really discouraging times of my life. I felt really grateful to be alive (I spent my 26th birthday in the hospital), but still not how I expected to spend my entire Fall. Even after I got back to America, it wasn’t for another couple months that I could even walk again…I would hobble around the apartment with crutches and all my friends had to visit me since I couldn’t even walk a block. My point is — not throwing myself a pity party — that even though it was completely horrible and miserable for us, WE CAN DO ANYTHING. I just know that you can get to where you want to be if you believe and know that we can beat DVT.

      I really recommend reading this blog. Roland features a monthly athlete, and each person’s story is truly inspiring. Every single person experienced a terrible DVT or PE and is up and running again.

      http://clot-buster-triathlete.blogspot.com/

      Good luck! And hope to hear more about your progress! We can do this. 🙂

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  3. Hi, Amaris. What a well-told, inspiring success story.
    I had my own DVT/PE story shortly after my 50th birthday, and have worked hard to get back to walking, swimming, etc. I was pretty fit before the incident, and afterwards could barely walk 100 yards without feeling tired and winded. Little by little–now I can swim a mile, walk 5 or more, hike at altitude–it CAN be done, even if you are older when it happens. My doctor was surprised and pleased. My doctor said to wear compression stocking for 3 months, but I wore them for a full year.
    Now 3 years later, I have no issues with my leg, despite it being a very large clot (not as bad as yours, though.)

    You are an inspiration!
    Thanks for sharing.
    Elaine

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    • Hi Elaine,
      Thanks so much for the kind words! I’m sorry to hear that you had to go through a similar ordeal. It’s really great to hear that you’re not letting it hold you back though! I really think that working hard to get back in shape again is really the best way for us to live healthy, happy and pain free lives! 🙂 Hearing your story inspires me as well! Happy training and thank you for sharing your story!!!
      Amaris

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  4. Hi Amaris,,you inspire us all,,wish you more success and progress,,I want to ask you about leg cramps ,,I have been diagnosed with DVT about a month ago I walk throdisabling,,i am begining to embrace pain but what about leg cramps ?they are disabling..have you experienced leg cramps and how you dealt with them?

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  5. HI Amaris! I am a competitive cyclist and have been diagnosed with my second DVT in 10 years. It is about 6 inches in length in my femoral vein. I have been on blood thinners for a month and I can walk but am eventually met with a good deal of pain. Even if the clot is not gone, is it safe to push through the pain and begin physical activity. It swells and changes color when I push it. Did you experience this? I feel like the medical professionals I have met with have little experience with a young, active person. They don’t want me to do much. Any advice is greatly appreciated!

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    • Hi Kaitlyn,

      First, I’m so sorry to hear about your clot! I know it’s incredibly frustrating, especially when you have been active for so much of your life. I can’t imagine how you must feel having to go through this entire ordeal again. Do you know why you got a clot?

      I think it’s definitely important to talk to your doctor first before engaging in any kind of strenuous activity. What was safe for me and worked for me may not be medically okay for everyone and I don’t want to give you any bad advice!

      For my own situation, I similarly experienced a pretty severe clot — mine was from my ankle to nearly my heart, and unfortunately because I did not receive appropriately aggressive treatment, I was left with scar tissue in my thigh (femoral) vein, and also received a stent in my mid-section (iliac) vein.

      When I first became sick I was unable to walk and any kind of attempt to walk was met with a lot of pain. My leg would become incredibly swollen and would also change in color as well. I had been told by doctors that it would be unlikely that I would ever run again. However, after my current doctor treated me and enough weeks had passed such that my clot had become scar tissue and was no longer at risk of breaking off (and becoming a pulmonary embolism!), my doctor told me it would be okay to push through the pain.

      The problem is because my arteries were intact, blood could freely flow into my leg, but because my veins were damaged and clogged, blood could not leave my leg. This was the source of my pain and swelling. For two years I helped combat this by wearing an incredibly tight medical grade thigh high stocking, which would help reduce the swelling. Despite it being incredibly painful, I would go to the gym regularly and exercise using the rowing machine, walking on the treadmill, and finally running on the treadmill. It was admittedly not fun and definitely hurt a lot, but because my doctor told me I was at no risk of further damaging my leg (PLEASE check with your own doctor first!), I pushed through the pain, and eventually my leg compensated by creating new collateral veins. Now, whereas most people are able to really on their large deep vein, I have a web of new veins that allows me to work out and live an otherwise mostly normal life.

      I have also been on blood thinners since I got sick 3.5 years ago, and may likely have to be on them for the rest of my life, but have not faced any problems with working out and the thinners so far.

      Hopefully this helps, and definitely feel free to contact me if you have any further questions! Good luck!!!

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  6. Hi Amaris,

    Thank you for sharing your story. It’s truly inspiring. I developed a clot from my ankle to my groin 2 weeks after having a baby. I also found out I have a clotting disorder.

    My question for you is did you notice any changes in the degree of swelling since you were able to start running again?

    thanks,
    Melissa

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    • Hi Melissa, sorry I missed your message earlier. I’m so sorry to hear about your clot, but congrats on your baby! I hope that in the last few months you’ve gotten better and that the swelling has gone down for you. I noticed a huge difference since I started to exercise again. The swelling is what made it really painful/difficult to mobilize, but over time my body was able to make new veins (collateral veins) to help improve with blood flow. I still have some swelling issues if I’m standing for too long since the valves in my leg were damaged, but for the most part as long as I’m moving around (running and walking manually pumps my blood where my valves can’t) it’s no longer noticeable!

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  7. Hi Amaris,

    My name is Joana Mangune and I work for Health Monitor. We produce magazines, guides and more on several different health conditions.

    I’m currently working on our Deep Vein Thrombosis guide and am looking to interview people living with any type of DVT to find out how they cope with the condition. Our Guides are given out free in doctor’s offices across the country, so our hope is that they educate and inform people who are newly diagnosed, or help people who are struggling to manage a condition to find a treatment that works for them (whether it be through lifestyle changes, an all-natural fix or a medication).

    I’m looking to finishing this story by 1/25, so I would just need to hear back from you before then if you’re interested in helping us out! Really appreciate your help!

    All the best,

    Joana Mangune
    Health Monitor Network
    135 Chestnut Ridge Road
    Montvale, NJ 07645
    joanam@healthmonitor.com

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  8. Had my own dvt from left foot to my heart. 6 procedures and several surgeries as a result and even a brief moment I had died while in ICU. That was last July. I was mad they saved my life. My issues are far more critical than most and 1/4 of my body is titanium and 36 surgeries from an accident. After recently being tossed homeless from the love of my life and caregiver I stopped taking all my meds and had to travel 1,000 miles to find a new home I could stay. It’s back now after traveling, swelling and pain. This time I am doing nothing. This is my hope to finally leave this wretched awful disgusting earth. Heartbroken and lost I am done letting man intervene between me and God. This is it and hoping its soon. Goodbye Cruel wretched world. I cannot believe the one person I loved more than life itself could be so cruel and do what she did to me. She knew I would have no place but out of state and would lose my health coverage. By the time I could get new coverage in place I will already be dead from either my dvt or massive dilaudid withdrawl from my medtronics pain pump running empty. Goodby cruel world and yes Robin LaCasse Palmer left me all alone to die and she played she loved me until the very last day she sent me and my wheelchair out in the cold abyss to struggle each moment only to survive. Barely making it now two weeks. I pray to God my misery ends soon. Bring on my DVT and get it done. I am ready.

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