If someone told me a year ago today that I would be recovering from a life-threatening health condition, I wouldn’t have believed them. If they told me that it would be caused by a rare form of blood clots that affect only 1 out of every 100,000 people, I would have told them they were crazy. How could a young 30-something avid runner who is super health- and fitness-conscious have such a severe medical condition? Even now, the prospect seems, if not impossible, then at least exceedingly unlikely. As I’ve come to learn more about blood clots, in this past year, I’ve also learned that getting a blood clot is not as unlikely as one might think.
In April 2022, I was attending the NFT LA conference all week, a multifaceted conference dedicated to Web3 and NFTs (nonfungible tokens). As a technology influencer and YouTuber with over seven million subscribers, I was invited to attend and share the experience with my followers. It was a whirlwind of an experience with so much to do and see. I was so caught up in what was going on around me that I ignored how tired and strange I was feeling. I had noticed midweek that something in my arm felt off and it looked a little swollen, all initial signs of a blood clot.
My mom always taught my sister and I about the signs of what to look for when it comes to blood clots. She was aware that oral contraceptives were a major risk factor and wanted us to be aware. Even though I still knew the signs, I did not want to believe that something like that could happen to me.
Seventy-two hours later, the swelling increased, and I knew something was definitely wrong. But I didn’t think it was anything serious, so I decided to go to bed. As my head hit the pillow, I fell asleep wondering if I was going to wake up in the morning. Looking back now, that is never a thought you should fall asleep to, and I should have gone immediately to the ER.
I woke up the next morning with no improvement in my symptoms. I frantically texted my sister to let her know that I thought I had a blood clot in my arm. My mind started spinning with “What ifs?” But strangely, I wasn’t thinking about my health. Rather, I was more concerned with completing the work I had to do that day, the projects that were due the upcoming week, and so on. My sister picked me up and took me to a nearby urgent care. The nurse took one look at my now purple and swollen arm, and instructed me to get to the nearest emergency room.
My sister rushed me to the hospital, and once I got inside of the ER, things moved fast. It still feels like a chaotic blur to this day. Had I not been vlogging the whole experience for my followers, I don’t know how much I would've remembered.
Doctors brought me into an exam room for tests and an ultrasound before they confirmed my suspicion: I had a blood clot in my right shoulder. Doctors started me on IV blood thinners to keep the clot from growing, while they arranged for transport to a new hospital for a surgical procedure to remove it. I was in a state of panic. Knowing that many people have passed away or had a stroke as a result of a blood clot, made it even scarier in the cold stark hospital room surrounded by so many strangers.
When I entered surgery at the new hospital, I received a catheter-directed thrombolysis to dissolve the clot, to prevent it from moving somewhere more fatal, like the heart or brain.
Once I was out of surgery, doctors learned that the operation got only part of my clot out, so I had to go under again the next day. After the second operation, my doctors gave me the first piece of good news: The clot had dissolved. I was mostly immobile at that point. Both arms were connected to so many different machines, and the medicine they were injecting into the clot put me in a high-risk category, so I had to be monitored constantly in the ICU. The disconnect between my body that normally served me so well, arms that helped me in my martial arts training and legs that ran for miles with ease, brought new levels of discomfort in addition to the pain from my current state.
That evening, I began feeling chest pains. You better believe that this time I acted fast, immediately telling the doctors what was happening. Around 1 a.m. they wheeled me into a room for a CT [computerized tomography] scan of my chest and soon learned that a piece of blood clot broke off and traveled into my lungs.
The back-and-forth over the course of the next four days took a toll on me. My friends came to see me, which lifted my spirits, but I knew that in order to get my health back, I had to calm my mind to the best of my ability. I focused on breathing to stay calm throughout the whole ordeal, because honestly, I didn’t know what else to do. Eventually, I was given the go ahead to leave the hospital with blood thinners and a spotty conception of what was to come.
How I Am Recovering From a Blood Clot
Today I may look like I am in good health in my YouTube videos, and I do feel better both physically and mentally, but how I feel now doesn’t take away from the experience I had or the journey I am still on.
My specific diagnosis was “thoracic outlet syndrome,” which is a rare form of thrombosis in the arm, caused by downward pressure from muscles in the shoulder. We think that due to intense exertion through my lightsaber and martial arts training that my body developed a clot from the pressure of my rib on the vein.
My recovery is nowhere near over. In fact, I will have to endure another surgery to have one of my ribs removed as a result of the clot, which is a pretty rare result, but one that will best prevent another clot from forming.
Luckily, today I feel pretty good. I was able to get off the blood thinners after a few months, which is great but also scary because anytime I feel anything weird in my arm, I get super nervous it’s happening again. It’s something that may never leave the back of my mind when something feels off.
I am beginning to get back into martial arts. I have started by watching classes, and over time I hope to fully dive back into to my lightsaber training. I am able to go back to the gym and go on short runs, but it is crucial that I remain highly alert to any signs or symptoms of another clot. But by exercising as much as I can, always remaining hydrated, and taking care of my mental health, I am doing everything in my power to prevent a reoccurrence.
It has been over five months since that day at the conference, and over time I have realized what I wish I had known before enduring this experience. I hope that other young, healthy women can learn something from my experience.
3 Things to Know About Blood Clots
1. Know the Signs of a Blood Clot
Venous thromboembolism, the medical term for blood clots, is one of the leading causes of preventable hospital death in the United States. Many people, no matter their age, race, gender, or lifestyle, simply do not realize the many things that can increase a person’s chance of developing a clot. These include several everyday activities, like:
- Sitting for long periods of time
- Oral contraceptive pill
- Giving birth
- Going through cancer treatment
Warning signs of a blood clot, include:
- Swelling or tenderness in the leg or arm
- Discoloration in the leg or arm
- Chest pain
As a society, we should be more aware of such warning signs and encouraged to seek medical treatment as soon as we notice them, even if we think it can’t happen to us.
2. Always Listen to Your Body and Trust Your Gut
While we caught my blood clot early enough to treat it, I don’t know what difference it could have made if I had gone to the doctor immediately, instead of waiting. If you feel any numbness or swelling, do not brush it off. Time is of the essence with many medical issues, including blood clots.
As the U.S. Patient Advocate with the World Thrombosis Day campaign, I have learned just how many young survivors have stories like mine, where they thought it was just leg pain from yesterday's run or a strange sleeping position. The more people know about the signs and symptoms of a blood clot, the more clots can be prevented.
3. Being Young Does Not Make You Invincible
Being young and healthy doesn’t disqualify you from the possibility of developing a blood clot, like deep vein thrombosis (DVT). It’s worth recognizing that sometimes even athletes are the most susceptible to the condition. Anything can happen to anyone at any time, which is why it is even more important that the signs, symptoms, and stories of blood clot survivors are shared.
If I hadn’t eventually gone to the doctor, I may have died. I am grateful this was caught early enough to treat, and I thank my incredible medical team. My sister Jenna was the best caretaker I could have asked for throughout the entire process. I am also thankful to my online community for listening to my story and sharing theirs in exchange.
All in all, I consider myself lucky. I may have never had the chance to reach the amount of people I have if it weren’t for my career. I believe it is a blessing in disguise. I hope that by sharing what I wish I had known before my blood clot, I will help others prevent their own or help them in their early stages of recovery.
World Thrombosis Day falls each year on October 13. It is a day dedicated to spreading awareness of the signs, symptoms, and risk factors of this condition that affects nearly 900,000 Americans each year. I hope more young people will join me in recognizing this day and, in the process, helping to save lives and stop the preventable deaths caused by this condition.
iJustine (Justine Ezarik), U.S. Patient Advocate for World Thrombosis Day, is a tech content creator on YouTube, a New York Times bestselling author, a podcast host, actress, and blood clot survivor.