The words I am about to write have been bouncing between the walls of my skull for the past year. They never rest, though they do get quiet during periods of no travel or when I’m alone. When I’m up in the air, or under the sheets, the words scream relentlessly. You almost died for (because of?) this. And today they are screaming relentlessly. Today is the one-year anniversary of the week I was admitted to the hospital with deep vein thrombosis and a correlating pulmonary embolism.
Here’s what I know. I know that dying is easier than living. Living is a decision. It is a conscious waking pain and battling that pain all day long. It is injections of heavy-duty blood thinners self-administered directly into the fleshy bit of your abdomen, causing the area around it to turn a sexy shade of eggplant. It is the measured and struggled-for breaths of air, shallow at first and accompanied by the feeling of an invisible knife stabbing you between the ribs. It is walking with the pain of a congealed mass of what is supposed to give you life, stuck, hidden behind your knee, restricting blood flow to your lower limb, leaving it stiff and cramping. It is the blood tests, one after the other as hematologists in busy hospitals full of people who are a degree more or less fortunate than you work to determine whether you inherited this unfortunate propensity or if you brought it upon yourself. Provoked is what they call it when you have no genetic markers. You provoked this, they will say, eventually; (they will not say because you wanted too much, your sexual and metaphysical freedoms, but you will think that is what they mean when they say provoked). They will say this after the man you traveled and slept with and loved left you. Because the only way you can receive the news that you can never travel again is alone, in a hectic hospital, with needles and tubes leading blood away from your veins and water leaving trails away of your eyes, surrounded by people who are a degree more or less fortunate than you.
To say that today is a milestone is an understatement. It’s hard not to feel the weight of everything I’ve been through the past year; it’s hard not to feel incredibly sad for all I’ve lost and incredibly happy for, well, my life. I’ve never been one of those optimistic sick people. I struggle with a lot. I struggled with whether to tell this story for the past year, because (for me) there seemed to be a lot of shame attached to it. Ultimately, I think it’s extremely important for people, especially women, to know what causes DVTs and PEs, how this is related to travel, and what can be done to prevent this from happening to anyone else.
How did this happen?
The simple answer to this is: I was on hormonal birth control (the pill) and I went on a trip that involved sitting for more than 4 hours.
In late July 2013, I flew to Orange County, California, by way of Las Vegas, from Philadelphia, for my very good friend’s wedding. Since she and her now-husband live in Asia, the event would be a rare opportunity for me to see them without traveling halfway across the world. My then-boyfriend and I landed in Vegas, drove to Newport Beach for the wedding, and then spent the following days driving the long way back to Sin City by taking Route 66. All in all, the road trip totaled exactly 800 miles, so there’s actually a possibility that the clot in my leg developed in the car, not in the air.
Women who take hormonal birth control are more at risk for developing blood clots because the primary component in the pill is estrogen. Among many other things, estrogen is responsible for increasing clotting factors in blood. When I was on the pill and sitting (inactive) either on the plane or in the car for many hours at a time, this decreased my circulation and allowed the clot to form.
What were my symptoms?
As soon as four days after arriving back in Philadelphia, I felt a cramping in my lower left leg/calf muscle. It felt almost exactly as if I had pulled a muscle, or had overworked it during exercise, only I knew I hadn’t gone running for 10 days or so and it would have been extremely unusual to develop such a delayed sports injury. After three days of gradual-to-increasing pain (which seemed only to exist while sitting in my work chair), I scheduled an appointment to speak with my primary care physician. I knew my risk factors, and I was certain something was wrong with me.
By the time I saw my doctor, a week had passed since returning home, and almost two weeks since embarking on the trip. I did not display any kind of clotting symptom externally. Usually, when someone develops a blood clot in her leg, the leg becomes red/inflamed and swollen to the touch. Mine looked and felt (externally) normal. My doctor’s theory was nerve compression, that somehow my office chair was causing a pressure on my leg to cause the pain. She recommended I get an ultrasound, despite a repeated assurance that “probably everything was okay.”
I continued to take the pill.
The ultrasound results = negative
It was extremely difficult to schedule a non-emergency ultrasound; the soonest the hospital would give me was two weeks, so my doctor ordered a rush. When I arrived for my appointment, the technician was nonchalant and dismissive. “Who sent you here?” she asked. I explained my situation and that my doctor wanted to check on my leg. “Usually clots don’t happen to people so young. How old is your doctor?” She squirted some jelly on my leg, had a look, and said “Nope, there’s nothing here. You’re clear.” I would later find out that she had no right to diagnose (or to talk to me so rudely), but the hospital doctor appraised the images as negative and so, my primary-care physician prescribed me some muscle relaxers and talked to me about getting a new office chair.
I continued to take the pill.
The next week = more pain, and shortness of breath
The pain in my left leg gradually became more and more severe. I could no longer bend my foot when walking, and eventually the only way I could physically walk was to drag it behind me like a peg leg. The only way I can describe this is a cramping, a severe and unending Charlie’s Horse. I began to pop ibuprofen and other pain relievers once an hour. I took a two-and-a-half hour road trip to DC and nearly fell out of the car upon arrival, unable to support myself standing. My then-boyfriend was audibly sick of hearing me complain, so I kept quiet. I stopped walking to work because I was becoming overly-fatigued. I started to take the subway, and found myself gasping for breath walking up the steps. I joked to my coworkers that I needed to start working out again.
The weekend before I was admitted to the hospital, I had a girlfriends-trip planned to the beach. I ignored all of the signs something was severely wrong, including: not being able to carry a case of beer one-half block to my car, not being able to walk up one flight of steps to my beach motel room without pain-level-10 stabs in my right side, not being able to walk a single flat city block without stopping to catch my breath (as if I had just run ten miles), not being able to breathe while laying flat in bed, and not being able to walk on sand (at all). My best friend insisted I go to the hospital; I vehemently refused. I had an appointment to see my primary-care physician the following Monday, and I convinced everyone and myself that I could make it until then.
When I think about this weekend, I think about the wave. My two friends had left to use the bathroom, and I (not having the energy) stayed behind on the beach, to “watch our stuff.” When I saw it, I knew the wave would hit our little set-up before it even crashed. I, sitting in a low beach chair, was helpless to move out of the way. The ocean washed over our blanket and bags, swirled around my chair. I was effectively immobile, the pain in my leg prevented me from saving our things from salt-water disaster, and my lungs couldn’t have handled the rush of rising from my chair, let alone dashing up the beach, anyway. I repeat: I could not stand up from out of a chair; I let the ocean wave crash into our belongings. Something was definitely wrong.
I continued to take the pill.
When she saw me unable to breathe the following morning, my doctor sent me straight to the ER. I walked the nine city blocks from her office to Pennsylvania Hospital, the last walk I would take for quite some time. Within an hour, a “massive” blood clot was found (via ultrasound, by the same technician, who could only say “Oh. There it is.”) behind my left knee and after a series of tests (including a pregnancy test, because, lol) they had discovered the network of clots in my right lung. (The clot from my leg had broken off and traveled up into my lung, and this is what is inherently dangerous about a leg clot). I officially had deep vein thrombosis (a DVT) and a pulmonary embolism (PE) and had I waited even one more day, I could have collapsed from an oxygen shortage. I very nearly could have died.
I would stay in the hospital for four days to treat the clots and anxiety (as it turns out, when you can’t breathe, you panic). I was told that if it were just a DVT, they could release me to self-administer blood thinners. Since I had a PE as well, they needed to make sure my lungs were clear and that I could breathe before releasing me.
Recovery and aftermath
The most immediate effects were on my medications and my travel. I first had to stop taking birth control. Then I had to cancel a flight to Indianapolis, and remain grounded until the knee clot cleared.
The blood clots in my lungs dissolved when I was in the hospital. If you think about your lungs like a tree, all of the blood vessels are the branches. The clots were smaller and easier to remove here. There is no drug that “cures” clots; you must begin a regimen of blood thinners that assist your own body’s process of breaking them down. Since the one behind my knee was so large, it would take a month before I would be pain-free in walking and quite some time after that until I felt the heavy blanket of fatigue pull away. Whenever I got frustrated with this process, my doctors, friends, and family would have to remind me of the trauma I’d been through.
I had to self-administer a shot of a drug called Lovenox into my abdomen twice a day while taking an oral drug called Warfarin to get my blood to a “thinness level” that was acceptable for my body to dissolve clots. I cannot understate the mental hurdle I had to clear in order to stick a needle, twice a day, into my lower stomach. I never got used to it. Then, I had to get blood drawn once a week (an INR test) and a corresponding number. Frustratingly, I never could manage to stay in range, despite eliminating what felt like the whole portfolio of green vegetables from my diet (since they would only serve to keep my blood thick and strong). Eventually I was put on another drug called Xarelto and I continued to take blood thinners until January 2014. Because I couldn’t walk and all I could eat was essentially bread and meat, I was the most physically weak I’d been in my life.
It was on the day I received a hospital bill for $30,000 and was left questioning what is the price of my life that I began the process of the breakup and a month later was told by a hematologist that I could never travel again. I cried a lot during the last half of 2013.
Phew, that’s a lot. So, what is the meaning of all this? What about travel?
It may have been the weakest part of my life, but also the strongest. It took about one minute for those words to sink in, those terrible awful words “never travel again,” before I looked the doctor straight in the eye and said “I need a different answer, because even if this kills me, I’ll never stop traveling.” It felt so satisfying, so humbling, in that moment, to know what I was willing to die for. It made me feel grateful. It made me feel alive. That moment was a gift.
Eight tests later proved that the clot was provoked (brought on, by external factors), not hereditary. The doctor’s compromise was that I could fly, but to anywhere West Coast and beyond would require a shot of Lovenox before and after every flight, because as a former clot victim, I was (and will be) more at risk to develop them in the future. A single dose of Lovenox costs upwards of $1000 before insurance, so this is no joking matter. I’ll take it. And I have taken it. I’ve taken off, and every time that plane wheel has lifted from tarmac since that day, I have felt a deep swelling of gratitude, and relief.
I cannot be on birth control, which makes dating and pregnancy prevention slightly if not wholly more stressful. I know I’m not ready to become a mother, and if I allow myself, I do feel sorry that I can never just be a normal girl. Carefree doesn’t exist anymore. A phantom ache jolts me into a compulsion to get out of my chair and walk every thirty minutes, especially on flights.
And here I am, one year later, and I feel like I’ve shed a skin, like I am a new person. Last week, I successfully scaled Telegraph Hill in San Francisco, and was mindful the whole time of how far I’ve come. I’ve had one of the best travel years of my life; I started the New Year (my first flight in six months!) in Charleston and then got to Chicago, Dallas, Barcelona, Madrid, Seville, Tampa, Montreal, the Finger Lakes, Memphis, and finally back to California, back to the where it all started. In this one year of life, I’ve confronted death in almost every place. I’m humbled. I’m ready to move on. I want to keep traveling, keep living, keep doing, keep being, keep learning, keep feeling. Pain so extreme can only be felt if you’re alive. And that is a beautiful thing.
Thank you, everyone who helped me get here. Everyone who lifted me up. I’m so happy I have you.
What can you do? If you are a woman taking birth control, and you are a traveler, please recognize the risks. It is important to stay mobile. On flights (or train/car rides) for that matter, be mindful to get up and walk around every hour in order to maintain your circulation. Flex, flex, flex. If you feel cramping or shortness of breath after a long trip, see a doctor immediately. Don’t wait. Don’t let yourself be talked out of it. Don’t be scared. Listen to your body. It’s usually right.