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Take Our Survey

Take Our Survey

We are embarking on an important project to build patient education for the prevention of venous thromboembolism (VTE). This project has been funded by the Patient Centered Outcomes Research Institute (PCORI), approved by the Johns Hopkins Medicine Institutional Review Board and is in collaboration with the National Blood Clot Alliance (NBCA).

The purpose of this study is to identify and prioritize topics of importance to patients and their families regarding VTE prevention that may be used to better educate hospitalized patients.

This project will comprise of a series of up to 5 Web-based surveys. In this first survey, we will ask some information about your background (Web link below). Your input in this assessment is very important, but is also completely voluntary. We estimate that each survey should take less than 10 minutes to complete.

https://www.surveymonkey.com/s/ZPC9JHX

Thank you very much for your participation and your continued support.

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Help us prioritize educational topics of importance to patients & families for #DVT #PE #VTE prevention #PCORI #NBCA http://goo.gl/7ck3b1

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NBCA Hosting 5th Annual Fun Run in Honor of World Thrombosis Day

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Advancing blood clot awareness, prevention, diagnosis, and successful treatments to #stoptheclot.

🩺 National Primary Care Week: Oct. 6-12 🩺 T

🩺 National Primary Care Week: Oct. 6-12 🩺

This week, we recognize the essential role that primary care providers play in supporting patient health, especially for those managing or recovering from serious conditions like blood clots.

After experiencing a blood clot, having a trusted primary care provider to follow up with is critical. Primary care providers ensure ongoing monitoring, manage medications, and offer personalized guidance to prevent future clots. They are your partner in long-term care, helping you navigate your recovery and reduce risks.

In this video clip, Dr. Paul Lewis of Baycare Health Systems in Clearwater, Florida and a member of NBCA’s Medical and Scientific Advisory Board, explains the importance of establishing care with a primary care provider.

Watch the full recording of our August PEP Talk on the role of PCPs in blood clot diagnosis, treatment and care, and how to select the right PCP for you if you need to establish care. Find it at the link in bio!

#stoptheclot #bloodclots #nationalprimarycareweek #pcpweek #primarycareprovider #primarycarephysician #bloodclotprevention #bloodclotrecovery #bloodclotawareness

"At 29, I considered myself to be fit and almost i

"At 29, I considered myself to be fit and almost indestructible. I don’t smoke, I don’t drink and I have a myriad of athletic accomplishments. I’ve run multiple marathons, I’m at a healthy weight, and I train in the gym regularly.

All of the above left me feeling completely lost when I started to experience a pain in my chest and shortness of breath. I reduced training and went to my doctor, who initially diagnosed me with a pulled muscle in my back.

I told my doctor it wasn’t a pulled muscle because I knew what that felt like. Also, my heart rate was elevated beyond the normal range (45 BPM up to 70).

A week passed and my sleep began to worsen. I coughed up blood and couldn’t breathe if I turned my head to the right. I decided to call the emergency line and was rushed to the hospital once they asked about my family history of clots. (My mother has factor V Leiden).

I had two bilateral pulmonary emboli in my left and right lungs. I then developed a third not long after sitting in a car for hours. The hit to my physical and mental health was devastating. People struggled to comprehend how I, the young fitness guy, could get so unwell so quickly and how it could be from something like being seated for too long.

Like my mother, I was also diagnosed with factor V Leiden. It’s an ongoing battle within myself to keep well, manage this life condition, and try my best to return to doing the things I once loved."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #factorvleiden #familyhistory #knowyourrisk #athlete #bloodclotawareness #bloodclotprevention #bloodclotsurvivor #PE #pulmonaryembolism

HAPPENING TONIGHT: Join us tonight at 7 p.m. ET fo

HAPPENING TONIGHT: Join us tonight at 7 p.m. ET for our October PEP Talk on how to prevent blood clots while in the hospital and stay healthy once you return home.

If you or a loved one have a hospital stay on the horizon, you won’t want to miss this!

Register at the link in bio.

#stoptheclot #peptalk #bloodclots #hospitalassociatedbloodclots #knowyourrisk #livewebinar #bloodclotawareness #bloodcloteducation #bloodclotprevention #HAVTE

HAPPENING TOMORROW: Join us Tuesday, October 8 at

HAPPENING TOMORROW: Join us Tuesday, October 8 at 7 p.m. ET as we dive into a critical topic: hospital-associated blood clots.

Did you know that blood clots are a leading cause of preventable hospital deaths? Learn how you can protect yourself and your loved ones during hospital stays.

We’re thrilled to have Dr. Elliott Haut from Johns Hopkins Medicine, an expert in blood clot prevention, who will share insights and answer your questions.

📅 Date: Tuesday, October 8

🕒 Time: 7 p.m. ET

💻 Where: Register for this virtual event at the link in bio.

#stoptheclot #HAVTE #peptalk #bloodclots #hospitalassociatedbloodclots #knowyourrisk #livewebinar #bloodclotawareness #bloodcloteducation #bloodclotprevention

"In October 2021, I had a fall that caused my left $"In October 2021, I had a fall that caused my left knee to dislocate. It was determined that I had fractured my patella, and torn the medial patellofemoral ligament (MPFL) in my knee. Since I had a history of dislocations, I opted for an MPFL reconstruction to reduce the chance of dislocation in the future. I had MPFL reconstruction and an open reduction-internal fixation (ORIF) surgery to fix my fractured patella. After my surgery, I was not educated on the signs of blood clots. Just days after coming home, I started to have cramping in my left calf and my ankle was swelling. I was told to take more pain medication. At my two-week post-op appointment, I brought up the pain and swelling to my surgeon. He renewed my pain medication prescription and told me he wasn’t concerned about blood clots because I was too young. Over the next five weeks, the pain got worse, and the swelling spread. I reached out to my surgeon and several advice nurses, but I was dismissed and given more pain medication. At my six-week post-op appointment, I again brought up the swelling and that I was experiencing cramping in my groin and was dismissed. Seven weeks after my surgery, I went to the ER after my partner insisted I get another opinion. I was diagnosed with a DVT that extended from the back of my knee through my pelvis into my inferior vena cava which was provoked by my knee surgery. There was barely blood flow to my foot and immediate action was taken. An IVC filter was placed and a thrombectomy was performed to remove the clots. I was told that I had gotten extremely lucky that none of the clots broke off. I spent the week in the ICU. Due to the damage to the vein in my knee, I’ll be on blood thinners for life. I’m now physically healed and focusing on navigating the psychological impacts of this experience. I still struggle with PTSD and anxiety." Learn how to protect yourself from post-surgical blood clots at our next PEP Talk tomorrow. Register at the link in bio.$

The National Blood Clot Alliance will be at the Am

The National Blood Clot Alliance will be at the American College of Chest Physicians Annual Meeting in Boston next week! We’re excited to connect with this clinical community to discuss the latest in pulmonary embolism prevention, diagnosis, effective treatment, and of course, patient advocacy.

We'll also be sharing patient resources and real-life experiences to help clinicians better understand the challenges we face as patients.

What’s the number one thing you want the clinical community to know about your patient experience? Let us know in the comments!

#stoptheclot #bloodclots #vte #chest2024 #centersofexcellence #coe #bloodclotawareness #bloodcloteducation #bloodclotpatientcare #bloodclotprevention #bloodclottreatment #bloodclotpatient

The New York Marathon is one month away and traini

The New York Marathon is one month away and training for Team Stop the Clot runners is in full swing! As the November 3 race date draws near, we’re showcasing each of the remarkable individuals who will run the iconic 26.2 miles in support of NBCA.

Meet Emily Fetherston of Newport, Rhode Island! She’s running the New York Marathon with her friends Hilary and Katie in memory of Hilary’s father, Mike, who died of a pulmonary embolism in March.

“Our goal for National Blood Clot Alliance is to bring awareness and support for blood clots, and our hope is that resources are provided, informing everyone to know what to look for, especially in early phases of identification,” Emily said.

“Mike Malecha was an amazing father to my very best friend. Above all else, I am running to honor him and his extraordinary family. I am lucky enough to run this marathon alongside Hilary Malecha, Mike’s daughter and Kalie San Felipe, who was instrumental in raising awareness for this cause.”

Join us in supporting Emily’s mission to fight blood clots at the link in bio.

#stoptheclot #nycmarathon #nycmarathon2024 #bloodclots #charityrace #fundraising #pulmonaryembolism #pe #bloodclotawareness #bloodcloteducation

"On September 8, 2021, when I was 24, I had an eme

"On September 8, 2021, when I was 24, I had an emergency appendectomy. Four days later, I went into the ER for extreme calf pain and tightness in my chest, as it felt like I couldn’t get a full breath.

I was diagnosed with DVTs in my left leg and bilateral lower lobe pulmonary emboli. I was admitted to the ICU step-down unit for 24 hours on a heparin drip before being discharged home.

I was placed on 20mg of rivaroxaban. During a repeat CT scan of my chest in December 2021 to check if my PEs had cleared, I had a vein blow in my left arm, which led to a DVT in my left brachial vein while still consistently taking my rivaroxaban.

I was then placed on apixaban until April 2022, when my hematologist cleared me to stop my blood thinners as my genetic testing came back negative. Two weeks after stopping my blood thinners, on May 5, 2022, I went back to the ER and was diagnosed with a partial DVT in my left calf in one of my left mid-posterior tibial veins.

I have now been placed on 20mg of rivaroxaban for life. I had an IVC filter placed before having my gallbladder removed in August 2022 to prevent getting more PEs post-surgery and was thankfully able to have it removed two weeks after my surgery without complications.

In terms of risk factors, I was on birth control pills and took a four-hour plane trip from Chicago, IL to Seattle, WA, followed by a three-hour drive from Seattle to Vancouver, Canada a few weeks before my emergency appendectomy. My genetic blood tests have come back negative.

My experiences with DVTs and PEs have changed my life and I’m extremely grateful to be here today at 26 years old. I am very thankful for my amazing hematologist, doctors, and nurses who have helped me and continue to follow me on this journey."

Learn how to protect yourself from post-surgical blood clots at our next PEP Talk on Oct. 8. Register at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #surgery #HAVTE #postsurgerybloodclots #bloodclotawareness #bloodcloteducation #bloodthinners

October is Healthy Lung Month, founded to educate

October is Healthy Lung Month, founded to educate the public about the importance of protecting our lungs.

A pulmonary embolism, or a blood clot in the lungs, can block a pulmonary artery, stopping blood flow to a lung, which may cause a section of lung tissue to die. This is known as a pulmonary, or lung, infarction. Early detection and proper treatment protects your lungs and your life!

Please take this opportunity to learn and share the signs and symptoms of a pulmonary embolism:

- Sudden shortness of breath
- Chest pain that’s sharp and stabbing; may get worse with deep breath
- Rapid heart rate
- Unexplained cough, sometimes with bloody mucus

Call an ambulance or 9-1-1 immediately for treatment in the ER if you or a loved one experience these symptoms. Read more about the signs and symptoms of a PE, risk factors, and how to prevent blood clots at the link in bio.

#stoptheclot #bloodclots #healthylungmonth #lunghealth #pulmonaryembolism #pe #pulmonaryinfarction #bloodclotawareness #bloodclotprevention

"The first pulmonary embolism I had was in 2015, s

"The first pulmonary embolism I had was in 2015, six weeks after having foot surgery. I was terrified as I couldn't breathe. I was put on a blood thinner and hospitalized for three days.

My second pulmonary embolism was at the end of 2022. I had chest pain, so I went to the ER. They found the PE with a CT scan just like before.

But this time I hadn't had surgery. My PE was completely unprovoked. I was so scared and asked what had I done to cause this. The doctor said, 'Nothing.'

I am now on a blood thinner, apixaban. It is good but bad. I shouldn't have any more PEs now that I’m taking it, but I need to be on this medication for life.

I do feel lucky that the PEs didn't take my life. But I have a new awareness that these things can happen.

This experience has taught me that life goes on after blood clots. My advice to others is to stay as active as possible after having a surgical procedure, and always listen to your body."

Learn how to protect yourself from post-surgical blood clots at our next PEP Talk on Oct. 8. Register at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #surgery #HAVTE #postsurgerybloodclots #bloodclotawareness #bloodcloteducation #bloodthinners #footsurgery #safesurgery

If you've experienced blood clots or have a family

If you've experienced blood clots or have a family history of them, it's crucial to be aware of the risks associated with hospitalization. Hospital-acquired blood clots, also known as hospital-acquired venous thromboembolism (HA-VTE), are blood clots that form in patients during or within three months of a hospital stay or surgery.

Before a hospital stay, it’s important to have plan that details how to prevent clots while in the hospital and after you return home. You may still be at risk for a blood clot for 90 days after you leave the hospital.

We’ll be discussing hospital-acquired blood clots at our next PEP Talk on Tuesday, October 8 at 7 p.m. ET with our guest, Dr. Elliott Haut of John Hopkins Medicine.

Don’t miss it! Register at the link in bio.

#stoptheclot #peptalk #stoptheclot #peptalk #bloodclots #hospitalassociatedbloodclots #knowyourrisk #livewebinar #bloodclotawareness #bloodcloteducation #bloodclotprevention #HAVTE

Help to save lives and save money at the same time

Help to save lives and save money at the same time!

he registration fee for the National Blood Clot Alliance’s 2024 Fun Run in honor of World Thrombosis Day increases tomorrow, October 1. Now is the perfect time to secure your early bird registration!

Whether you run, walk, or roll one mile, 5K or 10K, every stride raises awareness and supports the fight against blood clots. You can complete the course of your choosing anytime between October 11 and 14.

Ready, set go! Sign up at the link in bio.

#stoptheclot #worldthrombosisday #bloodclots #funrun #charityrace #virtualrace #bloodclotawareness #bloodcloteducation #bloodclotevent #bloodclotprevention

"About two weeks after a surgical procedure, I beg

"About two weeks after a surgical procedure, I began having pain on my left side near my rib cage and towards my back. I assumed I had pulled a muscle due to overcompensating with my upper body post surgery.

The pain became relentless and I began having shortness of breath that I assumed was musculoskeletal pain from a pulled muscle. I knew the risks of a potential pulmonary embolism post-surgery as an ER nurse and decided to get checked out just to be safe.

The ER physician did not want to do a CT and said I was young, healthy, and clinically looked great, but he ran a D-dimer at my insistence. The results were elevated, so a CT was ordered.

A large clot was found in my right pulmonary artery and I was admitted for three days and oxygen-dependent for two weeks. I stayed on apixaban for six months and my doctor recommended stopping due to the clot being provoked.

Four months later, I was driving a lot for a travel nursing contract and started to recognize all the same symptoms, despite me taking every precaution while driving. Once again, I was found to have several clots in my lungs.

I’m very lucky to not have any cardiac issues resulting from this and slowly but surely am getting back to normal life. I’m very thankful that I trusted my gut in the beginning! Working with my hematologist, we now know that I have a clotting disorder and will forever be on apixaban. Thankful for many more trips around the sun with my family!"

Learn how to protect yourself from post-surgical blood clots at our next PEP Talk on Oct. 8. Register at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #surgery #HAVTE #postsurgerybloodclots #bloodclotawareness #bloodcloteducation #bloodthinners #bloodclottingdisorder

Did you know that being hospitalized can put you a

Did you know that being hospitalized can put you at a higher risk for developing life-threatening blood clots? Whether you're recovering from surgery, managing a serious illness like cancer, or immobilized due to an injury, the risk is real—but you can take steps to protect yourself.

Join us for an important October PEP Talk with our guest, Dr. Elliott Haut of Johns Hopkins Medicine. We’ll dive into the hospital-associated risk factors that increase the likelihood of blood clots.

You’ll learn:

- How prolonged immobility, surgery, or certain medical treatments can lead to clots

- Signs and symptoms to watch out for

- Life-saving prevention strategies

Don't let your recovery be sidelined by something preventable. Knowledge is your best defense—whether you're a patient, a caregiver, or an advocate, this PEP Talk will give you the tools to stay informed and proactive.

Save your spot today! Sign up at the link in bio.

#stoptheclot #peptalk #stoptheclot #peptalk #bloodclots #hospitalassociatedbloodclots #knowyourrisk #livewebinar #bloodclotawareness #bloodcloteducation #bloodclotprevention #HAVTE

"In 1994, I had my son prematurely at 24 weeks. Th

"In 1994, I had my son prematurely at 24 weeks. They did a bunch of testing and found out that I had antiphospholipid syndrome.

I had another preterm baby at 25 weeks three years later. I was followed by a high-risk OB/GYN at the time but no other preventative measures were done while pregnant.

Throughout the years, the APS diagnosis got lost in my medical records. I always had joint pain and was prescribed anti-inflammatory medications. In 2021 I had a medial collateral ligament (MCL) surgery to repair a torn MCL ligament in the knee.

Within the first two weeks of the surgery, I had pain in my left calf. I thought it was related to the surgery. Within the next couple of weeks, I was getting shortness of breath to the point that walking down the stairs was a task.

Due to Covid, I went to a Covid clinic. They told me to get to the hospital. I was diagnosed with multiple bilateral PEs. All lobes were involved along with a saddle clot. I stayed in the ICU for three days.

NBCA resources helped put my APS diagnosis puzzle together. In the ICU, I read up on what a blood clot was. I came across an article on blood clots and APS. I mentioned to my pulmonologist that I was diagnosed with APS years earlier and he had me tested for it. It came back as triple positive.

This led to many hospital visits with a hematologist, rheumatologist, pulmonologist, and my PCP. I’m still on my journey to return to a healthier state, but it’s getting easier now that I’m on hydroxychloroquine to help relieve inflammation and warfarin."

Learn how to protect yourself from post-surgical blood clots at our next PEP Talk on Oct. 8. Register at the link in bio.

#stoptheclot #bloodclots #stoptheclotstory #bloodclots #APS #antiphospholipidsyndrome #HAVTE #postsurgerybloodclots #bloodclotawareness #bloodcloteducation #kneesurgery

🌍Today is World Contraception Day! Contracepti

🌍Today is World Contraception Day!

Contraception empowers people to take control of their reproductive health, but it's important make informed decisions when choosing the right method.

Did you know that some hormonal contraceptives like the pill may increase the risk of blood clots? The risk is even higher for people who use the patch and ring because those methods contain higher amounts of estrogen.

Understanding your personal risk factors, like family history or recent surgery, can help you make informed decisions. If you're concerned about blood clots, consult with your healthcare provider about the safest options for you.

Stay informed, stay safe, and choose what's best for your body by knowing your risk for blood clots. Use our women's risk assessment at the link in bio.

#stoptheclot #worldcontraceptionday #bloodclots #birthcontrol #contraception #knowyourrisk #bloodclotprevention #bloodclotawareness #bloodcloteducation

September 25 is World Pharmacists Day, a time to a

September 25 is World Pharmacists Day, a time to applaud the invaluable contributions that pharmacists make to health care and their communities. Pharmacists are especially important to blood clot patients taking anticoagulants, or blood thinners.

Pharmacists provide support in medication management, safety, education, and adherence. As medication experts, they optimize treatment and enhance the quality of life for blood clot patients through personalized care, monitoring, and follow-up.

Thank you to all of the pharmacists who not only dispense medication but also offer support and advice to the blood clot community!

NBCA’s New Patient Guide is a comprehensive resource for blood clot patients, detailing the vital role of pharmacists and the entire medical team. Have you downloaded your New Patient Guide yet? Do so at the link in bio.

#stoptheclot #bloodclots #pharmacists #worldpharmacistsday #bloodclotcare #anticoagulants #bloodthinners #medication #bloodclotprevention #bloodclotawareness #bloodcloteducation

🌟 Celebrate Women’s Health & Take Action! 🌟

Today we’re celebrating National Women’s Health & Fitness Day — a day dedicated to empowering women to take control of their health! Whether you join a fitness class, schedule a preventive health screening, or begin making healthier dietary choices, it's a perfect reminder to prioritize your well-being.

We invite you to take action to honor your health: Sign up for NBCA’s 5th Annual Fun Run in honor of World Thrombosis Day (October 13)!

October 11-14, you can choose to run, walk or roll a distance of one mile, 5K, or 10K—anywhere, anytime!

Stay active, connect with others, and honor your journey to recovery and health. Let’s keep moving together!

📝Sign up today at the link in bio!

Tag a friend who inspires you!

#stoptheclot #worldthrombosisday #bloodclots #funrun #charityrace #virtualrace #bloodclotawareness #bloodcloteducation #bloodclotevent #bloodclotprevention #racetostoptheclot #WTD2024 #womenshealth #nationalwomenshealthday #bloodclotsurvivor #PEsurvivor

"In January 2024, I started having a hard time wal

"In January 2024, I started having a hard time walking up a long hill to get to my car after work. It got to the point where it scared me how hard I was breathing by the time I got to the top.

In February, I had a pre-surgical exam for a shoulder replacement scheduled in March. Every test came back normal. I had surgery on March 13. All was fine until I developed an infection at the surgical site and exactly one month post-op and I had to have the replacement re-done.

I ended up with a PICC line and had nurse visits at home and injections of antibiotics three times per day. During this time, I noticed some slight difficulty breathing but was so focused on everything else I didn't think much of it.

In May, I finally saw my PCP and she ordered a pulmonary function test because I couldn't walk 10 feet without sitting down. I couldn't get in for the test until July.

At a scheduled appointment with my doctor, I mentioned my symptoms and he ordered a D-dimer. The results were crazy high. On the Friday before Memorial Day, I went to the emergency department, where I was diagnosed with DVTs in both calves and multiple bilateral PEs in both lungs. I spent five days in the hospital on IV heparin and was released on oral apixaban

When I followed up with my PCP, her comment was, 'I never even considered a blood clot.'

I had two major surgeries when I already had clots. I feel lucky to be alive."

Learn how to protect yourself from post-surgical blood clots at our next PEP Talk on Oct. 8. Register at the link in bio.

#stoptheclot #bloodclots #stoptheclotstory #bloodclots #shoulderreplacement #shouldersurgery #piccline #HAVTE #postsurgerybloodclots #bloodclotawareness #bloodcloteducation

NBCA Thrombassadors raise blood clot awareness in

NBCA Thrombassadors raise blood clot awareness in their communities, and we need your help to extend our reach!

Our goal is to have Thrombassadors in every state across the US. So far, we have coverage in 42 states, with just eight states remaining to achieve full participation.

If you’re a blood clot survivor, caregiver, or advocate in any of the following states, please consider volunteering your time to spread blood clot awareness in your community!

- Alaska
- Kansas
- Maine
- Montana
- New Hampshire
- North Dakota
- South Dakota
- West Virginia

Go to the link in bio for more information and to sign up!

#stoptheclot #bloodclots #thrombassador #communitythrombassador #volunteering #bloodclotawareness #bloodcloteducation #bloodclotvolunteering

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