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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Introducing Women & Blood Clots, a Life-Saving Initiative

While blood clots can impact anyone, ranging in age, activity levels, weight, overall health and even gender, women alone face a continuum of risk throughout their lifetimes that is unique to them. Birth control and family planning, pregnancy and childbirth, as well as the treatment of menopause symptoms all involve critical decisions that increase a woman’s risk for developing life-threatening blood clots. Already faced with intricate decisions involving self-protection, pregnancy, children, families, aging care and overall health, it is easy for a woman to feel overwhelmed in the face of these decisions. Nearly as varied as the people devastated by blood clots, is the available information aiding women to make healthy decisions for herself and her family.

Until now. Stop the Clot National Blood Clot Alliance, in partnership with the Alexandra L. Rowan Memorial Foundation, have launched a life-saving initiative specifically designed to educate women about the risks they face and ways to reduce those risks, Women & Blood Clots. Tragically, 23 year-old Alexandra lost her life due to a blood clot, with no warning. In order to preserve her memory and continue to raise awareness on a broad scale, this new resource focuses explicitly on the information women need to make informed decisions to protect themselves as well as understand the signs and symptoms of blood clots, including blood clots deep vein thrombosis (DVT) or blood clots in the arms or legs and pulmonary embolism (PE) or blood clots in the lungs.

Women are at an increased risk for blood clots during three key phases of their lives.

  1. While taking oral contraceptives (or birth control). Visit the site or watch this short video to learn more about pregnancy and family planning, including birth control methods and blood clot risks.
  2. During Pregnancy and Childbirth, including the initial weeks post-childbirth. Visit the site or watch this short video for information about risk during pregnancy, including anticoagulation therapy while pregnant, giving birth while taking blood thinners and risk management after giving birth.
  3. When receiving hormone replacement therapy (HRT) for the treatment of menopause symptoms. Visit the site or watch this short video for more information about receiving hormonal treatment as an aging woman.

Women & Blood Clots is a uniquely feminine and bright site dedicated to educating a variety of women while remaining simple to read, easy to navigate and full of valuable, life-preserving information.

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As a blood clot awareness advocate, Women & Blood Clots is very important to me because the issues pertaining to birth control, pregnancy, child birth and hormone replacement therapy and blood clots or recovery are the topics I discuss each and every day with so many of you. While understanding risk, evaluating treatment options, and recognizing the signs and symptoms of potentially deadly blood clots should always be discussed with your chosen medical professional, Women & Blood Clots comes as a much-needed resource in an area that was previously laking for concise, clear and easily accessible information. In my personal life, I still talk to females far too frequently who are taking birth control, pregnant or even a new mother and have no idea they are at risk for something that could claim their lives. This resource is critical, it is essential and it is life-saving.

According to the American Public Health Association, nearly three-quarters of people know little or nothing about DVT, or blood clots that form in the deep veins of the legs. Similar research conducted by the National Blood Clot Alliance shows that fewer than 10% of a national sample of people had any knowledge of DVT and PE. Furthermore, only 30% of people who recognized what a blood clot is were familiar with signs, symptoms, or risks factors. Those statistics are staggering considering that also according to the NBCA, as many 900,000 people in the United States are affected by blood clots. About 100,000 of these individuals will die due to a blood clot. That is about 274 people every single day. The number of deaths due to blood clots each year is greater than the annual number of deaths due to AIDs, breast cancer, and car accidents combined, yet, they remain virtually unheard of by a vast number of people (Stop the Clot).

Please, bookmark Women & Blood Clots, share it on social media or email it to the women in your own life. Even if you do not know how to approach what are often sensitive topics, read over the information or watch the videos and share a few facts with the women you cherish. Usually, the conversation evolves on its own simply by sharing your story. For example, I often share what happened to me and the ladies I have spoken to may say, “I’m so glad that won’t happen to me,” and I then follow up with, “If you’re taking birth control you are still at risk” or “If you’re planning to have children you’re at risk too.” Then I tell them what signs and symptoms to watch out for. Most women want to know more about initiatives they can take to care for themselves or their loved ones and walk away from the conversation feeling empowered about their own health. By equipping people with the knowledge to make informed decisions, we ultimately save lives and hopefully move toward a future where fewer lives are lost as a result of blood clots.

In an effort to foster even more conversation, awareness, education and empowerment, the National Blood Clot Alliance along with the Rowan Foundation, will soon launch an online support group and discussion community, powered by Inspire, to provide a safe and supportive place where, patients, loved ones, family members, friends and caregivers can converse, share and support one another when facing the life-altering effects of blood clots and blood clotting disorders. I will share this resource here once it becomes available and you can sign up for updates too. 

Reader Writes In: Have you been waiting for a resource like this? Who is one person or where is one place you plan to share this information? 

There is hope for healing and you are not alone,

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Stop the Clot Chicago 5K – Run, walk, donate and make a difference! By Christina Martin

 

Christina Martin Survivor Speaks

About 3 years ago I started my journey as a “real runner”.  I have always liked to run but very short distances. In high school I ran 100 meters and in college I would jog to keep my weight down.  I always watched the larger marathons on TV from Chicago, New York and Boston but thought…yeah, that is not for me.  In October 2013 my best friend Manu and I watched the Chicago Marathon on TV. I cried because I always wanted to do it but thought I couldn’t, it’s 26.2 miles. As I sat there in self-pity and tears, he stared at me with a blank look and walked out the room and said “just do it” for crying out loud.

LOL! That was the trick. I thought why not. If I fail I fail but at least I tried, then I could go back to say “I told you so”.  After many weeks of researching races, shoes, training books, and running gear I signed up for my 1st marathon 2011 Huntington Beach, Surf City on Super Bowl Sunday.

Manu was right by my side ordering movies on TV to get me inspired, buying racing gear and listening to my stories about how many miles I ran, how cold it was to train in Chicago winter, how bad my feet and knees hurt, and all the gritty details. Manu and I made plans to fly into LAX to make it happen. On Feb 6, 2011 I was officially a marathoner at 4 hours and 54 minutes. I remember crossing the finishing line and seeing Manu’s smiling face. I was so so happy. That horrible Charlie-horse since mile 23 was gone, I didn’t feel nauseous and the cuts from my race day shirt on my back didn’t feel so bad…it was officially the happiest day of my life. Manu supported me and made my dreams coming true.

Manu continued to support me through 5 more marathons over the last 4 years. As was preparing for Chicago Marathon Oct 12, 2014 (2) days before his birthday when I was informed by Manu’s best friend that Manu passed away from a blood clot. I knew he had issues in the past but he was 36 years young so I didn’t take it that serious.  His last blood clot was misdiagnosed as a hamstring pull and on September 28, 2014 he passed away at the hospital. My heart was officially broken, as my best friend who I love with all my heart went to be with the Lord.

Manu was buried on October 10, 2014. I ran the marathon in his honor on October 12, 2014, the hardest thing I have done in my life. Running with a broken heart is 10X more difficult that running with stress fractures, sore knees and medical issues. Instead of looking for his beautiful face at the finish line, I looked at the heavens and said “we did it”! October 14, 2014 was his birthday. I went to his grave site with my marathon bib and knew that I wanted to make a difference.

I’m hosting the 1st Annual Stop the Clot Chicago 5K on Mother’s Day May 10, 2015. It’s to honor Manu Ajamu Williams. I’m working with the National Blood Clot Alliance, a charity that supports awareness and research of blood clots.

Come run/walk with us this spring if you live in or around Chicago so we can STOP THE CLOT.

To find out more (including registering for Stop the Clot Chicago 5K), please visit: http://www.stoptheclotchicago.com/

#AwarenessMatters Blood Clot Awareness Month

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The facts are staggering – every time I read them.

  • Blood clots (DVT and PE) affect an estimated 900,000 Americans each year (Source).
  • Blood clots (DVT and PE) kill an estimated 100,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS and motor vehicle accidents combined (Source).
  • One person every minute will be diagnosed with DVT in the U.S. One person every six minutes will die from a PE in the U.S. (Source)
  • Blood clots are a leading cause of preventable hospital deaths in the United States (Source).
  • Blood clots are the leading cause of maternal deaths in the United States.
  • 1 in 3 people who are diagnosed with PE will die.
  • In 25 percent of people who experience a PE, the first symptom is sudden death.

The number of deaths from blood clots exceeds those from breast cancer, AIDS and motor vehicle accidents combined. Yet, they are virtually unheard of by the general public. Until very recently, blood clots have even gone unnoticed by the media, however, that is beginning to change and I believe we can continue to make a difference. Thanks to the advocacy work of survivors like NASCAR’S Champion Driver Brian Vickers blood clots are becoming something people have heard of. Even more recently, the unfortunate passing of former former Trail Blazers player Jerome Kersey and blood-clot related health scare of Heat forward player Chris Bosh have elicited even more awareness to this deadly injury/illness. Blood clots do not discriminate, they can impact anyone at any time. As more and more people who have lost because of or survived blood clots, the more and more awareness we can raise. #AwarenessMatters. It makes a difference. We can make a difference.

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Connect with BCRN on Facebook and Twitter for even more social media images and #AwarenessMatters posts throughout the entire month of March.

Information Sharing

Share, share, share. Tell someone you know about the signs, symptoms and risk factors of blood clots. Knowing could save your life or the life of someone you love. You can also share this post on social media or through email.

Symptoms of DVT
    • Swelling in the affected leg, including swelling in your ankle and foot.
    • Pain in your leg; this can include pain in your ankle and foot. The pain often starts in your calf and can feel like cramping or a charley horse. It won’t go away with regular stretching, massaging or rest.
    • Warmth over the affected area.
    • Changes in your skin color, such as turning pale, red or blue or purple.
    • You need to know in about half of all cases, deep vein thrombosis occurs without any noticeable symptoms.
Symptoms of PE
    • Unexplained sudden onset of shortness of breath
    • Chest pain or discomfort that worsens when you take a deep breath, cough or even lie down
    • Feeling light headed or dizzy, or fainting
    • Rapid pulse
    • Sweating
    • Coughing up blood
    • A sense of anxiety, nervousness or impending doom
Risk Factors
    • Hospital stay
    • Major surgery such as abdominal or pelvic surgery
    • Knee or hip replacement
    • Major trauma such as an auto accident or fall
    • Nursing home living
    • Leg paralysis
    • Older than 65 years
    • Trips over four hours by plane, car, train or bus
    • Active cancer or chemotherapy treatment
    • Bone fracture or cast
    • Birth control pills, patch or ring
    • Hormone replacement therapy
    • Pregnancy or a recent birth
    • Prior blood clot or family history of blood clots
    • Heart failure
    • Bed rest over three days
    • Obesity
    • Genetic/hereditary or acquired blood clotting disorder

Share your story. How are you raising awareness this March?

There is hope for healing and you are not alone,

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Giving Thanks

I wanted to come up with the perfect thing to say for Thanksgiving. The perfect thing that would be even more perfect than anything, anyone else out there could say this year. Day and night I’ve been thinking about it for the past couple of weeks and especially the last few days and still, nothing seems right. It’s not that gratefulness is hard to talk about – I know we are grateful to be alive, to be out of the hospital, to have answers to our questions, to have a family, friends, plans and a chance to fulfill our dreams, a second chance at life – it’s that I struggle to convey the magnitude of that gratefulness in just a few words. And while I am thankful for all of these things, my heart is full this holiday season with gratitude that goes far beyond myself, my family and my own recovery.

I am grateful for the George’s of the world. Who is George, you ask. He is the person behind the scenes, if you will, who makes this blog worth writing. He is the person who is always there in the support forums with an encouraging word for others, including myself, even when he’s not feeling his best. George is the one who tells it like it is with all the clarity and compassion and empathy he can muster. He’s the one who shares this site again and again and again. He screams it from the street corners, “You are not alone! You’re not the only one going through this! Look! Read this!” He asks questions, he engages, he doesn’t take no for an answer. When he wants to give up, he keeps on going; he reaches out, he asks for help, he doesn’t conceal his pain or anger or frustration at the situation we have all been catapulted into without a moment’s notice. When I want to give up, when I think I’m not making a difference, when I think nothing I have to say could possibly make an impact, George is there to sit me down, look me straight in the eyes, and tell me that yes, what I do actually does matter. He doesn’t take no for an answer and he won’t settle for less than my best. George, my friends, is you.

I am grateful for the comments and posts and emails that take my breath away and move me to tears when I least expect it. I am often overwhelmed with the amount of people who come forward to talk about how a blood clot has impacted their own lives. Tales of survival, of loss, of heartbreak and of joy – I have heard more stories than I can count. But, not more stories than I can remember. I remember each story I encounter, even if it is just a detail or two. Something always stands out behind the author – a true voice to the story being told. There are times I want to give up talking about blood clots, give up writing about recovery and give up this whole thing – the stories you have shared over these past two years and continue to share keep me going when I feel like giving up. As long as there are stories to tell, my work at BCRN is not finished. As long as people’s lives are being impacted by DVT and PE, there is more to say and while it may not always be easy, either is recovery, either is talking about it, either is sharing what has happened in your own personal triumphs and tragedies and yet, you still go on talking about it. So too, must I.

I am grateful for abundance in community. While it isn’t always easy to see, there are significant changes being made to raise awareness and bring DVT and PE as major public health concerns to the forefront. The community you have helped to build here grows stronger everyday and is widespread. I am grateful for athletes like NASCAR’s Brian Vickers and Olympic Speed Skater Rebekah Bradford, who have spoken out about their personal encounters with blood clots. Through stories such as there’s, we continue fighting to raise even more awareness. I am grateful for organizations like the National Blood Clot Alliance who fight to bring awareness to everyone. Our community is great, it is strong, and it is growing stronger each day. I am grateful for the opportunity to keep this community growing in abundance and change the way the public, medical professionals and the lawmakers think about blood clots. More needs to be done to stop blood clots and save lives. Together, we can make a difference.

I am grateful to be able to say Happy Thanksgiving to you all. I remember my first holidays after me PE – they were miserable, nothing mattered. I didn’t feel good, I didn’t think I would ever feel good, and I felt completely alone. I was sad, I hurt and not even a beautiful turkey (even though I’m pretty sure the turkey was just normal that year), dinner with my family or glittering Christmas tree could make me feel better. There was no way to fix it, no way to speed it up, no way to change it. Happy Thanksgiving did not come out of my mouth to anyone, not a single time. To you, the person that is hurting, that doesn’t see a way out, that isn’t enjoying dinner or doesn’t even have a dinner to enjoy, Happy Thanksgiving. To you, the person who is alone in a crowd or alone in your bed, Happy Thanksgiving. To you, the person whose leg hurts, whose lungs burn and who doesn’t know what tomorrow will bring for your health, Happy Thanksgiving. To you, the person who is recovering well, but just can’t forget the ones who are not yet, Happy Thanksgiving. To you, the outspoken individual who has shared your story a million times already and to you, who is still too unsure to tell it, Happy Thanksgiving. To you who has lost your job, or to you, who is wondering how you will pay for your medication next month, Happy Thanksgiving. To you that has found stability and is trying to move forward in your recovery from where you have already been, Happy Thanksgiving. To you who is grieving the loss of a loved one and to you, the one that wonders why you’re still here, Happy Thanksgiving.

And to you, George, Happy Thanksgiving.

Reader Writes In. How are you giving thanks this year?

There is hope for healing and you are not alone,

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