Blood Clot Recurrence: Fear No More

Blood clot recurrence is something that happens. It is true that blood clots can happen more than once to the same person. The fear of blood clot recurrence is not at all uncommon if you have experienced a blood clot. You are not alone in wondering if – or even when – a blood clot will happen to you again. While some people only experience one clotting incident, myself included, some people experience many clotting incidents or even continual clotting, which is frightening to think about. Whether you have had one clot or nine clots, the fear of blood clot recurrence is valid because blood clots are dangerous and they can even be deadly. Blood clots cause physical trauma, pain and discomfort as well as emotional and psychological stress, depression and anxiety. Wondering if a second, third, fourth or tenth blood clot will happen to you, only increases the sometimes already-present emotional discomfort of surviving something that one in three people sadly do not.

Fear of Blood Clot Recurrence

In the initial days, weeks and months after my diagnosis, I worried about a second blood clot all the time. I was fearful that every twinge, pain or unusual feeling was another clot moving through my body (presumably on its way to my heart or lungs) – and I was certain that clot would be the one to claim my life. The fear consumed me and at times I could barely eat or sleep. I felt alone in my fear and I wondered if I was overreacting, further emphasizing the thought that I should keep my fear to myself. No one understood, I was certain. So, not long after my initial diagnosis, I found myself trapped in a vicious cycle of worry and and fear of a blood clot recurrence.

For days, weeks, months and even years I worried, the everlasting fear of a recurrent blood clot was at the forefront of nearly all of my thoughts. It hurt, it took its toll on my physical and emotional health – I was tired and anxious – and I feared there was no way out.

Then one day, about four years into my recovery, I realized I wasn’t afraid of getting another blood clot anymore. It was a miracle, it had to be. That was the only explanation as to why a fear I had held on to for so long was seemingly suddenly gone – without any extra encouragement on my part. Of course I prayed, pleaded, cried and wished for the fear to go away, but it hadn’t for so long, so why now?

It was then that I realized, I had also come to understand a lot about blood clots – and even more importantly, a lot about myself – in those same four years. What scared me the most about my blood clot was that I had no idea it was happening: I didn’t know my risk, I didn’t know the symptoms and I didn’t know how I could have prevented any of it. From there, I was able to determine that – armed with knowledge and the passage of time – I had some very valuable tools to help me face, minimize and nearly eliminate my fear of blood clot recurrence.

How to Minimize the Fear of Blood Clot Recurrence

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Know Your Risk for Blood Clots

One of the most important things you can do to help prevent blood clots is to know your risk for blood clots. I had no idea I was at risk for a blood clot taking birth control pills with estrogen until a blood clot happened to me. Learn about your risks now.

You are at increased risk for blood clots if you or a close family member have had a blood clot before; you have had recent major surgery; you have an inherited clotting condition; have cancer; are immobile for a long time (confined to bed, long-duration plane or car trip, etc.); are pregnant or have recently given birth; or use estrogen-based birth control pills or estrogen for the treatment of menopause symptoms.

You could also be at risk be at risk for a blood clot if you: have a hospital stay, major surgery such as abdominal or pelvic surgery, knee or hip replacement; have major trauma such as an auto accident or fall; live in a nursing home, are immobile, have leg paralysis, are on bed rest for three or more days or are over 65 years old; are on a trip for over four hours by plane, car, train or bus; have active cancer or chemotherapy treatment; have a bone fracture or cast; are taking estrogen-based birth control pills, patch or ring; are taking estrogen for the treatment of menopause symptoms; are pregnant or have recently gave birth; have had a prior blood clot or family history of blood clots; have heart failure; are extremely overweight; or have a genetic/hereditary or acquired blood clotting disorder.

Once you know your risk for blood clots, you can work with your doctors to determine what steps you need to take to help prevent blood clots. For example: I am at risk because I have had a DVT and PE and I have antiphospholipid antibody syndrome, an autoimmune clotting condition. For these risk factors, I take a long-term anticoagulant as part of my treatment plan. I am also at further risk if I sit for long periods or become inactive. For these additional risk factors, I make sure I move around during the day, take extra precautions on long trips and do my best to eat well and exercise.

It is important to note that in 30 percent of patients there is no known cause for blood clots, also called idiopathic. While this is scary in terms of understanding your risk, there are still important things you can do to help ease your fear of blood clot recurrence: recognize signs and symptoms of blood clots and take steps to help prevent blood clots.

Know the Signs and Symptoms of Blood Clots

One of the scariest parts about my blood clot experience is that I had no idea what to watch out for in terms of signs and symptoms of blood clots – so I did not know I had any until it was almost too late. Had I known that I was at risk taking birth control pills with estrogen and that severe pain in my leg and difficulty breathing when laying down were symptoms of a DVT and PE, maybe I would not have waited so long to get help.

A blood clot in your leg or even arm may lead to swelling of your leg or arm, pain or tenderness not caused by an injury or that does not subside, skin that is warm to the touch or skin that is red or discolored. Call your doctor if you have any of these symptoms.

A blood clot in your lung can be life-threatening and may result in difficulty breathing, especially when lying down, chest pain that worsens with a deep breath, coughing or coughing up blood or a fast or irregular heartbeat. Call 911 or go to the nearest emergency room if you have any of these symptoms.

Take Steps to Help Prevent Blood Clots

The good news is, there are many things you can do to help prevent blood clots. Besides knowing your risk and recognizing the signs and symptoms of blood clots you can take some fairly simple steps to help prevent blood clots.

Talk your doctors if you have any risk factors for blood clots, including a family history of blood clots and together, devise a treatment plan. You can also talk to your relatives about your family’s history of blood clots. Before any surgery or procedures, talk with your doctors about blood clots to take preventative measures. If you are confined to a bed either in a hospital or at home due to surgery, illness or paralysis, talk to your doctor about ways to prevent blood clots. If you have been sitting for long periods or are traveling long distances, get up and move. Take steps to maintain a healthy weight, don’t smoke or quit smoking.

Do I still worry about a blood clot happening to me again? Sure, I do. I think that is a very natural part of surviving something that other people do not. I worry from time to time. However, what I can also tell you is that my fear of blood clot recurrence no longer consumes my thoughts and my time. If I think about it at all, it is a passing though, most usually connected to a specific memory about my blood clot or recovery.

There is hope for healing and you are not alone,

 

Sara


Reader Writes In: Are you worried about another blood clot? How do you handle your fear? What tips for facing the fear of blood clot recurrence can you share with others? Share in the comments.


What does it feel like to recover from a blood clot coverTo learn more about what it feels like to recover from a blood clot, visit here.


Are you suffering from depression after a blood clot? You’re not alone. For some tips to deal with depression after a blood clot, visit here.


To be a part of the private Facebook community, go here, and ask to join the group. Chat with you there.

From Make-A-Wish Employee to Making One of My Own Wishes Come True

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After my blood clot in my leg (DVT) and blood clot in my lung (PE) in the summer of 2012, I felt pain, fear and isolation with a degree of finality that I had never felt before. Physically, I had never felt as much pain as I did then and after losing all normal aspects of my life, I had never felt as hopeless and alone. I spent my days worrying about my health, my career, my ability to do the things I loved again and ultimately, my future. I did not know what I would be able to do with my life after blood clots, but I knew in regards to my personal and professional endeavors, it was always been important to me make a difference in the lives of others.

In searching for a way to get my life back on track after my diagnosis, I began working at Make-A-Wish Ohio, Kentucky and Indiana in hopes of finding a place where I could once again make a difference, this time in the lives of children facing life-threatening illnesses. From the beginning, I found I could relate to the Make-A-Wish mission to provide hope, strength and joy to those families going through unspeakable hardship, because I had been through a similar experience in my own life. Make-A-Wish gave me hope when I had all but given up on my future, strength to stand on my own two feet again, and joy in the opportunity to bring happiness to others.

When I launched Blood Clot Recovery Network in the early 2013, it was my goal to create a place where people could come together to share, learn, discuss and ultimately gain hope that, as a Survivor of blood clots, there is life and wellness. That while the pain, fear and isolation was the worst I had ever encountered, these feelings wouldn’t last forever and even more importantly, they didn’t have to be endured alone. While I hoped to make a difference once again in the lives of others, I feared that no one really cared about blood clots at the end of the day. Still, I said to myself, if I could help just one other person out there, I had done my job and I continued to pursue my advocacy work through BCRN.

Since that time, I know from your emails, posts, messages and tweets that I have reached countless people – far more than I ever thought possible. In fact, it was this community that gave me hope through some of my darkest days when I realized that I wasn’t going to be well in a week or two, or even six. Through it all, I kept writing and as this community expanded, so did my desires and dreams for raising even more awareness and elevating my work to another level that would give me the opportunity to reach an even greater number of people or make an even greater impact in the VTE community.

In light of those dreams, it is with great excitement that I have accepted a full-time position with the National Blood Clot Alliance as part of the Communications and Health Marketing team. In this role, I am excited to now be able to fully dedicate my days and my work to what I enjoy most, raising awareness about VTE. I am able to better pursue my passion and focus singularly on raising awareness and making sure people get the information they need to know about blood clots. Working with the National Blood Clot Alliance, and given the organization’s resources and unparalleled reach in the VTE community, I am confident I have an amazing opportunity to reach an optimal number of people, both those already affected by blood clots and those who don’t know what a blood clot is or how it might affect them.

It is without doubt that BCRN and the community you have helped create will continue. I look forward to continuing to blog and interact with you here. Your support, encouragement, stories and thoughts have made a difference, not only in my life, but in the lives of one another — in the lives of those who have survived, those who have lost a loved one, those who are scared, those who are recovering, those who are in pain, lonely and afraid, and those who are learning to live again. While I have provided the resources, it is you who has nurtured this community to make it what it is today.

To you I am grateful, and I hope you will continue on this journey of hope and healing with me, both here at BCRN and in my wonderful new relationship with the National Blood Clot Alliance.

There is hope for healing and you are not alone,

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World Thrombosis Day 2015: Join the Global Movement to Stop Blood Clots & Save Lives

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In just less than two weeks, the world will come together to celebrate World Thrombosis Day on October 13, 2015. World Thrombosis Day seeks to increase global awareness of thrombosis, including its causes, risk factors, signs, symptoms, evidence-based prevention and treatment; and ultimately strives to reduce death and disability caused by the disease.

What is World Thrombosis Day?

Founded in 2014, this is the second year for World Thrombosis Day (WTD) by the International Society on Thrombosis and Haemostasis (ISTH) in response to requests for a focused global awareness day on thrombosis. Each year, the WTD campaign centers around a specific area of blood clot awareness that has the potential to greatly impact the community and through increasing knowledge, hopefully reduce the risk and associated deaths that occur each and every day because of blood clots. Each year, blood clots affect more people than AIDS, breast cancer, and automobile accidents combined. Blood clots clots can, and do, affect anyone – from the very young, to the elderly to professionals to athletes to women to men. In the U.S. alone, up to 900,000 people each year are affected by blood clots in their legs and 1 person dies every 6 minutes due to a blood clot. The statistics are staggering.  

What is VTE?

Venous thromboembolism or VTE is simply deep vein thrombosis (DVT) + pulmonary embolism (PE). A blood clot that forms in a deep vein (usually in the leg or arm) is a DVT and a blood clot in the lung is a PE, which occurs when a DVT breaks free from a vein wall, travels to the lungs and blocks some or all of the blood supply to the lungs. PE can be fatal due to this obstruction. DVT and PE together are called VTE.

Why does it matter?

The positive news is, blood clots and the deaths that result because of them, are preventable. This year, awareness will focus on hospital related deaths as a result of VTE (deep vein thrombosis + pulmonary embolism). Being in the hospital is a major risk factor for the development of VTE. Up to 60 percent of VTE cases occur during or after hospitalization, making it a leading cause of  preventable hospital death. Patients who are hospitalized are at an increased risk for developing blood clots because of decreased mobility due to bedrest or recovery; or who experience blood vessel trauma due to surgery or other serious injury. In the U.S. alone, more than 540,000 hospitalized patients develop VTE and the procedures with increased risk are:

  • Orthopedic surgery (e.g., total hip or knee surgery)
  • Major general surgery (especially involving the abdomen, pelvis, hip or legs)
  • Major gynecological surgery
  • Urological surgery
  • Neurosurgery
  • Cardiothoracic surgery
  • Major peripheral vascular surgery
  • Chemotherapy for cancer treatment

I did not realize how important it was to understand your risk in regards to hospitalization and VTE because I have only been in the hospital for a DVT and PE. I have never been hospitalized for any major surgeries or injuries. I currently have a family member who is in the hospital for major surgery combined with cancer treatment and I was fortunate enough to be present in the hospital room when blood clots were being discussed. Risk was assessed and my family member was prescribed twice daily injections of lovenox to prevent blood clots. Prior to the surgery, a filter was inserted to hopefully prevent any PE complications after the procedure. Seeing the pain my loved one is already going through because of the diagnosis, I suddenly realized why it is also important to consider blood clots. With all of the things to worry about in terms of diagnosis and longterm recovery, I feel relieved that the hospital has skillfully and thoroughly done the best it can to reduce the risk of blood clots. Because my blood clot happened so suddenly, it mattered to be to see a different side of treatment. Blood clots and the pain and distress caused by them, can be prevented.

What can you do to help?
  • Take the Pledge and share. If you or a loved one is going to be hospitalized due to major surgery, illness or injury, be prepared discuss your risk and preventative plan with your healthcare provider. Taking this pledge can help remind you to do so if you are ever in that situation. 
  • Get involved on social media. Share, chat, tweet (details about the official chat below), discuss and show your support. These tools, including badges, banners and headers, will help you do just that.  
  • Share your story. Are you a VTE or blood clot survivor? Take a selfie, fill out this printout and share across social media. Be sure to include the hashtag #WTDay15 and #StopDeadlyClots.
  • Involve your own community. Explore, download and distribute WTD posters and flyers to help raise awareness in your corner of the globe. Talk to your loved ones about their risk.
Where will I be?

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  • World Thrombosis Day Twitter Chat on 13 October at noon U.S. ET. Use the hashtag #ClotChat to participate in a discussion about hospital-associated VTE. Follow @thrombosisday and @ClotRecoveryNet on Twitter for details.
  • Exclusive social media and blog posting on October 13. Don’t mis it. 

There is hope for healing and you are not alone,

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