Blood Clot Awareness Month Matters

Blood Clot Awareness Month Matters

It seems like every single thing has an awareness day, week or month. Whether it is a food, a hobby, a profession, or a health condition like blood clots – there’s a time for it. It’s great to bring widespread, concentrated attention to a cause or event that is important to you. After all, it’s how some people might find out about it when they didn’t know about it before. It’s sometimes not so good because it can feel like the Internet is congested with traffic and why do we have to hear about “one more thing” for a day, week or month. Whether you get on board with awareness days or not, there is still something to be said for why awareness about blood clots matters.

Blood Clot Awareness Month Matters

Below, I share more of my story in detail, but more than that, I also want to share why Blood Clot Awareness Month matters to me, and why I keep talking about Blood Clot Awareness Month years after I have healed from my blood clots. Blood Clot Awareness Month matters to me for two distinct reasons. First, a little bit of knowledge about risk and signs and symptoms can often help to prevent a life-threatening situation. Second, if you have experienced a blood clot that has threatened or changed your life, there is hope for healing, and there is hope that you can recover and live your life again. You’re not alone, either, even though it may feel like it.

Know Your Risk for Blood Clots

Blood Clot Awareness Month Matters: Know Your Risk

I was 29 years old when I had a blood clot in my calf (also called deep vein thrombosis or DVT), which broke off and traveled through my bloodstream to become a life-threatening blood clot in my lung (also called pulmonary embolism or PE). At the time, I was running half marathons, and I was working to achieve all the things you do to lead a healthy life: Exercising, eating right and losing weight. I didn’t know that blood clots can happen to anyone, or that I could be at risk, because I was doing everything right by taking care of myself.

After thorough investigating and testing by my medical team, it was determined that my blood clots did not have to do with things that generally go hand-in-hand with an unhealthy lifestyle (being overweight or sedentary, as an example), but that I had a somewhat rare acquired (not inherited) autoimmune clotting disease called antiphospholipid syndrome (also called APS). Blood clots are a common thing that can happen in people with APS, along with pregnancy complications in women, heart attacks and strokes. Along with blood clots, I also had low platelets as a result of APS, which can cause too much bleeding, making my situation complex and serious. I’m fortunate to have a hematologist who is skilled in managing difficult cases like mine.

Why Knowing Your Risk for Blood Clots Matters: Even if you do not think you could be at risk for blood clots, know that you could be. Below is a list of the most common risk factors. Look over them, discuss them with your doctor, and keep them in mind.

Know the Signs and Symptoms of Blood Clots

Blood Clot Awareness Month Matters: Know the Signs

While I may not have known my risk in particular for blood clots, so there was nothing I could do to prevent them with regard to that, I also did not know that anyone could be at risk, so it never occurred to me to know the symptoms of blood clots. The signs were there, I just didn’t know it.

I felt lingering, and then excruciating pain in my left leg, primarily when I put weight on it. Within a matter of a day or two, I also felt sharp, stabbing pain in my left ribcage and found it hard to breathe, particularly when I tried to sleep. I could not talk in full sentences. I thought both of my pains were related to running and fitness. I thought the pain in my leg was the return of a knee stabilization issue resulting in a pulled muscle, and I thought the pain in my side was due to running too fast while dehydrated.

As someone who was physically active, both made perfect sense to me at the time. I never thought to question the pain in my leg. If I had, perhaps I could have avoided a life-threatening situation when the blood clot traveled to my lung. I had about a day and a half between the two events, but since the pain in my leg steadily and noticeably worsened during that day and a half, looking back, I should have gone to an urgent care. Looking back, the signs were clear that this was not a normal running injury or pulled muscle.

Why Knowing the Signs and Symptoms of Blood Clots Matters: Even if you don’t have an identifiable risk factor for blood clots, or might have a story like mine, knowing the signs and symptoms of blood clots could still save your life. People can experience all, none or some of the symptoms. Knowing them saves lives. Below are the most common signs.

Know What Blood Clot Recovery Can Be Like

Blood Clot Awareness Month Matters: Learn About Recovery

I spent ten days in the hospital, where my life hung in the balance for several days, due to extensive clotting and bleeding concerns related to APS. After doctors stabilized my situation, I was sent home – with a wheelchair and an oxygen tank – where I would soon discover that I was only at the very beginning of what would be a long and painful journey (I’ve never been in so much pain before or since). It took me two years to physically recover from the blood clots, and a little bit more time to deal with the emotional trauma of facing the end of my life so young, and so unexpectedly. I will forever have to manage my disease and my clotting risk with medications and follow-up appointments.   

My experience changed the course of my life. It was only three months after my hospital discharge that I decided to start Blood Clot Recovery Network and share my story with the world. I wasn’t sure how that would go – you can’t go back after you share such personal details about your health online in today’s world – but I’m glad I took the risk. I want people to know there is hope for healing from blood clots, and if you’re going through a difficult recovery, you are not alone.

Why It Matters: Talking about the physical and emotional obstacles of recovery from blood clots is why I created this space, and why I continue with my work here to this day. If you are faced with an unimaginable situation after experiencing a blood clot, you are not alone. There is hope for healing.

If you think you might be at risk for blood clots, or if you don’t know, discuss it with a trusted doctor next time you see him or her. If you experience any signs or symptoms of blood clots, or think that you might be, don’t wait to seek medical attention. Call your doctor, and if you can’t get in touch with your doctor, go to the hospital or emergency room right away.

If you have a blood clot, find a doctor who can support you in what you are going through both physically and emotionally by either providing that care first-hand, or referring you to other resources. I entered my hematologist’s office for my first follow-up appointment the week of my hospital discharge, and the first thing we talked about was what my recovery would look like and how long it would be. Tell your doctor how you are feeling, from the start. If you’re not supported or don’t feel supported, consider finding another doctor who can help you. I know that’s hard when you don’t feel well, but it is so important.

More About Blood Clot Awareness Month

Learn More: Blood Clot Awareness Month Matters

Connect with my on social media channels where I’ll be having candid conversations about blood clot recovery and sharing encouraging reminders all month long. My most active profiles are my Facebook Page and Instagram. You can also find me on Twitter from time to time.

Join my Private Facebook Group for ongoing support where you will find me and a number of your peers. We’re approaching 6,000 members there, and I’m very excited to have created such a meaningful place for us to gather. I would love to reach that milestone this March, so if you’re not there yet, what are you waiting for?

Connect with the leading patient advocacy organization here in the United States: The National Blood Clot Alliance. If you want to help make a difference on a far-reaching scale, this is how you can do it. Visit here for all the ways to help raise awareness this month: Make the Choice to Stop the Clot®.

Spend some time connecting online too. Use one or more of the following hashtags in your online conversations: #hopeforhealing #notalone #AwarenessMatters #bcam

Why It Blood Clot Awareness Month Matters: Now, several years after my experience, I am no longer the only person publicly speaking or writing about what I have been through or sharing about how difficult recovery from blood clots can be. We are a community, and we have much to share and learn from one another.

Whether you decide to celebrate this month for Blood Clot Awareness or not, I hope you take a few moments to learn about your risk, and learn about the signs and symptoms of blood clots. If you’re in the midst of recovery or farther along in your journey, I hope you remember this: There is hope for healing from blood clots, and you are not alone.

Reader Writes In: How do you plan to participate in Blood Clot Awareness Month this year? I can’t wait to hear about it!

Share your story in the comments below.

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