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.
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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.
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.
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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 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
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.
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
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.
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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!
Fight Deep Vein Thrombosis 
Your story is amazing and I can’t believe it’s only been a year since it happened. I tell all my friends heading out on long flights to remember to walk around and stretch because we don’t need any more repeats of this situation.
Thanks for sharing.
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🙂
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I saw you mention this post over at Daily Strength, which I just joined. I’m a PE survivor too, mine happened on August 8th. I may put a link to this post on my blog here, if you don’t mind. You explain things so well about how the DVT and PEs happen. It’s still too new for me to be able to describe that well. Mine nearly killed me. I’m glad you’re here to enlighten and encourage others. You’re an inspiration!
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I’m so sorry you had to go through this, but also so glad to hear you made it. 🙂 Stay strong!
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I’ve just reread this and you did a great job explaining DVT. It’s amazing how many people (myself included) have no clue about this condition. No wonder so many die, they never saw it coming.
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Reblogged this on viewsfromsue and commented:
This talented writer does a great job shedding light on DVTs and PEs. I would encourage you to also do a search on this site for DVTs and PEs. Something you read might help to prevent this from happening to you or your loved ones. Peace.
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I also have Factor V Leiden. I had my first 3 clots while waiting for our travel approval to adopt our Daughter from China. That made a very anxious time even more anxious. I was able to make the trip and now nearly 8 years later I am still doing wonderfully. Only on an aspirin a day thankfull, able to get away from most of the thinning meds due to my knowledge and other lack of risk factors!!
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Hi Kara, I didn’t see you had commented! I’m so sorry to hear you had such extensive clotting. I’m glad to hear you are doing much better now though! 🙂
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Thank you so much, your case is so similar to mine. I am a diver and parachuter and 6 months after my PE episode happened by DVT after a knee surgery I strive to recover and catch up to my previous physical activity. I also have Leiden (are you sure you’re not my sister??? just joking) You gave me positive thinking and help to recover. You explain the issue in a simple and beautiful manner. If you don’t bother please tell me some guidelines for your post-PE and DVT effort and pt excercises. I think, as we say in Greece, we both deceived Charos, the angel of Death… Be well, take care and congratulations!
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Hi Georgios, so sorry I missed your post! I’ve decided to blog more frequently and just saw your message. So sorry to hear about what happened to you too. How is your recovery and training going? Would you still like to talk in more detail?
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Of course I like to talk about it and I am glad that you already inspired me. It’s so nice to have a case similar to mine, even if we are miles away. I keep on training first thing in the morning, lost some pounds and give more tense to swimming right now. I feel great indeed. I also encountered the same pain that you mentioned when I started running on January. My left knee (that I had the surgery) and the left leg (where the clot is) where really killing me. But step by step it improved and I think the key is to be always on the run… Tell me do you practice resistance training? Do you find it helpful in our case?
I am 39 diver and parachuter. For one year, since the DVT, the Air Force Doctors in Greece have stopped me for practicing scuba diving and parachuting, as I take the syndrom pill, which as you might know, is an anticoagulant pill. I also take follic acid to lift homocysteine in blood. In 2 weeks I will go to the hospital again, it’s the end of the period of one year, I will cut the pills but they are not definite if they allow me to return to diving and parachuting. I told them that it’s crucial for me to keep on doing what I was previously doing and keep on normally. I cross fingers that they allow me to go on diving and parachuting. I wish the best for your race, when is it? I have run the mid marathon 25 kms before, I am sure that you’ll make it, as you proved that you have strong heart and mind! Hope your next marathon to be the classic one in Athens, so we’ll have the chance to meet. Keep on the good job! Best Regards
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Georgios–so good to talk to you as well. It’s very impressive to me that you are a diver and a parachuter, what an exciting lifestyle! I do practice some resistance training and I find it is helpful. It’s hard to figure out what is the best method to improve blood circulation, but I find that anything that is difficult for my leg over time becomes easier over time. I like to think that my body thinks I’m crazy for pushing it, but then just has no choice but to create new veins to accommodate my lifestyle! 🙂
How does your leg look now? Do you still have clots that remain in your leg? For me it is especially difficult because the clots will remain as scar tissue for the rest of my life in my leg. As a result I will probably have to remain on the blood thinners/anticoagulant pills for the rest of my life. This makes a lot of sports and physical activities (where I might get hurt) not allowed. I am not an expert or doctor, but it seems to me that diving/parachuting would only be dangerous if you are on the blood thinners because if you get hurt, they cannot stop the bleeding. Is there another reason why you cannot begin these activities once you are off the drugs?
How does the folic acid work for you? I have not tried it, but any tips or suggestions you have would be great!
I’ve also started to do weekly posts on my training and different DVT topics. If you have any ideas or comments that would be wonderful too. 🙂
Please keep me posted on how your appointment goes and how you training goes! I will be thinking of you!
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Dear Amaris, I was eager to contact with you, as I am so happy ending a one year period of using blood thinners and visiting doctors, but most of all, I am happy to return to my pre DVT and PE life (of course with the precautions you have already and firmly mentioned) and back to parachuting and diving. After a meeting the doctors agreed that the DVT formed in my left leg and later PE encountered was mainly due to the knee surgery, with leiden to play a minor role. According to the current scientific data in these cases iit is recommended to use blood thinners for one year, so thank God, out with those!!! I’ll continue folic acid (phylicine pills) as they adjust the numbers of homocysteine in my blood. I don’t know if you also had low levels of homocysteine, this can be seen with a blood test. I also don’t know if you checked your heart condition, as after a PE, the heart might be affected. I had a triplex today that showed that my heart is now ok (it showed a bit tired a year ago). Good thing that after so many tests and screening I found out (except leiden) that I have a special physiology at heart that aerobic training is recommended and not so much anaerobic, such as resistence training.
As a result, from many doctors of every specialty that I spoke with, they all encourage running and swimming and basically “be on the run” and never stay motionless for long periods. In particular, the vascular surgeon recommends to cut the long trips to short intervals, avoid tight clothes, long periods standing or sedentary life, use dvt socks and control body weight. Although my clot is diminished, there is still the risk of after DVT syndrom, but I have no symptoms of it, even if the doctor, after the last triplex in the legs, said that I have to anticipate it. I’ve just learned that the clot will not go away with the blood thinners but basically with the proper way of life and the use of DVT socks.
So lets keep on training for the rest of our lives (who knows how much this will be… anyway who wants to live forever??? but everybody wants to live healthy and happy, so that’s the plan!) I totally agree that we have to try more than the ordinary person without DVT or PE case. Indeed, the initial pain in every activity is difficult to face, but that makes it more interesting, doesn’t it? When I don’t run for 2-3 days, I later feel that I start from the beginning… but I think that it’s a test to overcome, and the reward is great. I wish you all the best for the NY marathon and as I told you before, I hope that you soon participate in the classic marathon in Athens Greece. Keep on the good job, sister in arms!!! life is beautiful, we earned it and we have to show everyone that it worths it!
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Wow, Georgios! That’s such great news! 🙂 I’m so happy for you and so excited for your training. It’s really great that your recovery has gone so well over the year, and you can finally go back to living your life normally. Good doctors are so important, but I’m sure your determination and high spirits definitely helped you get to wear you are today. And who knows? Maybe because of this expereience, we will both be encouraged to continue exercising and staying healthy for the rest of our lives–we may even live longer and have happier lives because of it!
Good luck with you on all your training and please keep me updated from time to time. If you ever make it to NYC, would love to meet up!
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I wish the best to you too. As I read your posts I understand what you’ve been through. But as you conclude, let’s consider we are both lucky in the end! Tell me, do you run with the compression stocking on? I found it really hard to do it and when I practice I take it off. Do you use the stocking for just 6 months, as suggested, or you go on wearing it? During the summer I must admit that I don’t wear it so much but now that I stopped the blood thinners I consider it is a good idea to be more disciplined in the use of it. Do you wear it also during bed time? Does it cover all your foot and pelvis? Please tell me more about the kind of stocking and the use of it. Here in Greece I had to pay 75 euros (around 100 dollars) for just one pair. Do you recommend anything cheaper to buy through internet? Thank you
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Yes, I run with the compression stocking that goes up to my pelvis. Unfortunately for me, they were unable to remove the clot in time so the clot is now scar tissue. My vein is still blocked up and my valves damaged, so my leg gets swollen if I do not wear my stocking, especially when I exercise. If I exercise, the blood goes into my leg very quickly, but it cannot leave.
I’ve been told that I will need to wear a compression stocking for my entire life. Originally I was told I would have to wear it for two years minimum to help prevent post-thrombotic syndrome (which is swelling and pain for life). It’s important to wear the stockings for that long because the post-thrombotic syndrome can happen up to two years after the clot.
But I feel that my leg is still getting better–I can now walk around the house without my stocking and also sleep on my left side. Both of these things were difficult even six months ago! So maybe if I keep working hard, the stocking will eventually become optional for me!
And YES! The stockings are so expensive! I am trying to see if my insurance will pay for them. They are still expensive, but I buy my stockings at this website: http://www.compressionsale.com/
Their sales are better than full price, but I am not sure if it will cheaper once you add on the costs for international shipping–but defintely keep checking because they do even bigger sales a few times a year! I also only wear the stocking on my left leg only so when I buy a pair, I am actually getting two for my leg.
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I’m sorry that you were in Malaysia and they delayed the diagnosis of DVT. I guess you went to a doctor who was not aware that DVT is not something uncommon among endurance athletes. Any unilateral leg swelling would have automatically prompted investigation into DVT. I do see and manage DVT in Malaysia. I’m glad you’re doing your part in telling your story, hopefully this helps to educate the public and some doctors. In India they have Fight VTE Conference so you see this problem is getting worse.
NC
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NC, glad to hear that you are a doctor in Malaysia and that this is a point of concern for you. Education is critical and will save lives!
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Thanks for your informative blog. You are letting me know that engaging in activities such as running is possible after an extensive dvt experience, and that makes me happy. I am 40 and used to be very active, but had a dvt emergency last year and my confidence has consequently hit the floor. Sometimes I feel like a nervous teen again. I didn’t have any PE diagnosed when I eventually sought medical advice and was admitted to hospital as an emergency case. But there is quite a bit of damage to the leg with swelling a year later – and I wear the stocking. I don’t want to appear sexist but that is difficult for a man. It is amazing that you have broken thru some barriers that I thought would be impossible. I am now encouraged that I can change my mind set to overcome some restrictions I have imposed upon myself. All the best.
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Lee, thanks so much for reading. I know it can be quite discouraging, especially since you were once so active. Having to wear a stocking on one leg can be very uncomfortable, both physically and mentally as well, and I’m really sorry you have to go through all that. I really hope you don’t let this unfortunate incident get you down, and that you work to get back to your happy and active self! It can definitely be painful and you really have to play the long game, but I promise it is all worth it. I can’t believe how far I’ve come in just a couple years — the body is an amazing machine and can definitely overcome all of that damage! Good luck and keep me posted on your progress!
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Hi Amaris,
Grt to read your inspiring story and happy that you are on ur feet now to a greater extent. I hope ur leg will feel completely good very soon. Have you consulted vascular surgeons about the Pts and wat do they say about its treatment etc or its just wait and watch.
I also had a Dvt and PE one and a half year back resulting from a knee surgery. I injured my knee at gym and had to undergo an arthroscopic surgery. Lack of post op instructions, too much bed rest and some clotting disorders caused me to collapse nd get both dvt and Pe. I m still recovering from all of it. Lungs got better but Dvt left the gift of valve damage and hence pts. Having a sitting job, it gets problematic wid long sitting hours. I do daily exercise like cycling md swiming to get max relief from Pts. And you are rite being active does help greatly..i ll increase my activity if the knee recovered fully as i havent been able back to running yet.
Definitely feels grt to know that we are not alone in the fite as it has lot of physical and psychological impact on us. But we have to stay positive and help more people get aware as many people like us are unaware we f these dangerous medical conditions. I also knew it only when it was already PE and i collapsed. Ignored my leg swelling for many days attributing it to knee surgery.
Hope you conquer the marathon nd stay healthy and happy. Keep me posted if you find any doctor or treatment that makes the PTs better. Or otherwise if u cud advise how to tackle wid this in everyday life.
Best
Regards.
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