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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#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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