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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March: Blood Clot Awareness Month

I seem to have always known blood clots were a serious health concern – especially if you had one in your heart, lungs or brain. I heard about them in the general sense; for example, when discussing the elderly who had passed away or when talking about recovery from a major surgery or hospitalization. I didn’t know the signs or symptoms; that fatality from a blood clot could happen within moments of the first symptoms; or that it would ever happen to me at 29 years old and as an active runner. I thought I had a simple running injury and if I had known the symptoms, it may have made the difference between a treatable Deep Vein Thrombosis (DVT), behind my left knee, and the Pulmonary Embolism (PE) that went to my lung and almost killed me. It was nearly two days since my calf started to hurt until I went to the Emergency Room, breathless and in excruciating pain, both in my leg and side. I couldn’t believe the extent of the injury to my body, mind and emotions. It completely changed my life – no aspect was left untouched. And the thing is, other people – like me and unlike me – don’t know or don’t think it can happen to them. March is Blood Clot Awareness Month and as a blood clot survivor, I am doing everything I can to spread awareness about this deadly and often treatable injury.

I know they majority of people I know do not understand what I went through during my PE and recovery. They do not understand my physical pain and how I could look okay in spite of it. They do not understand that I took almost a month before I could even breathe without the assistance of an oxygen tank and how I went from running several times a week to not even being able to walk from one room to another. They do not understand how I could not use the bathroom by myself in the hospital, that I was in a hospital room well-equipped for medical personnel to take life-saving measures at a moment’s notice or that I couldn’t even sit up for days on end. They do not understand how my personal relationships, professional life and self-confidence suffered, some to irrevocable ends.

I attribute most of this to the fact that many people simply do not understand blood clots and the damage they cause to the body. People understand what it means to have a heart attack, stroke or cancer, but they do not often understand what it means to have a blood clot. They also do not understand that it could happen to them. I am trying to change that and help spread awareness not only for Blood Clot Awareness Month, but always. Consider this post a crash-course in blood clots and while it is in no way all-inclusive, I hope to present to some useful information for you or others you may know who don’t understand what happens when a person has a blood clot. Share it, print it or post it! Let’s get the word out about this silent killer.

Just the Stats

  • Blood clots (DVT and PE) affect am estimated 900,000 Americans each year (Source).
  • Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS,and motor vehicle accidents combined (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 (Source).
  • 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.
  • 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)
  • 10 to 30 percent of people affected by DVT/PE will die within one month of diagnosis.

The Facts

Who…
  • Can get a blood clot? Anyone can develop a blood clot for a variety of reasons. There are many risk factors that increase your risk for a blood clot (see below for more detail). In a nutshell, you are at increased risk 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.), or use birth control pills. It’s important to understand your own personal risk and also that anyone can develop a DVT at any time.
  • Most commonly treats a blood clot? Patients commonly see their general practitioner for treatment of a blood clot, but can also see a pulmonologist, cardiologist or hematologist. A hematologist is best equipped to handle ongoing care particularly if the patient has a clotting factor or other blood condition/disease contributing to the blood clot.
What…
  • Is a DVT? DVT (short for Deep Vein Thrombosis) is a type of clot that forms in a major vein of the leg or, less commonly, in the arms, pelvis, or other large veins in the body.
  • Is a PE? DVT can develop into PE (short for Pulmonary Embolism), a dangerous condition in which the clot detaches from its point of origin and travels through the bloodstream to the lungs, where it becomes stuck and prevents blood flow.
  • Causes a blood clot? Blood clots may form when either the flow of blood in a vein slows, damage to a vein occurs, or the blood is more clottable (such as with a genetic or autoimmune factor already in the body/blood).
  • Is a blood thinner? Also called an anticoagulant, a blood thinner helps to prevent clots from forming in the blood. They include medicines like aspirin, clopidogrel or Plavix, Warfarin — more commonly known as coumadin — and a variety of other medications that are used in the hospital setting, including injections like Heparin and Lovenox.
  • Happens after someone is diagnosed with a PE/DVT? Often times, a person is admitted to the hospital, especially if he or she is experiencing a PE. They are usually put through a variety of blood and imaging tests to check for high blood clotting factors in the blood (D-Dimer) and actual blood clots (Dopplar Imaging scan). Patients are usually put on blood thinners of some sort as soon as possible. Patients are often treated with pain reliving drugs and sometimes surgery is performed to remove the clot or place a filter to stop the clot from moving (usually in the groin), but these procedures are not always performed.
  • Does it mean if someone has a clotting factor? If someone says they have a clotting factor, it usually means they have a genetic (an example would be Factor V Leiden ) or autoimmune (an example would be Antiphospholipid Syndrome) mutation or condition that causes their blood to clot when it should not.
Where…
  • Can you develop a blood clot? You can develop a blood clot anywhere you have veins, but they are most commonly in the leg and less commonly in the arms, pelvis or other large veins of the body.

Why…
  • Is a blood clot so damaging? A blood clot is damaging because, depending on it’s path, it can cause great trauma to the body’s circulatory system, including the heart. It takes time and energy for the body to heal damage done to the heart and lungs, even if it is micro-damage. A PE is consider a traumatic event for a person’s body to go through.
  • Isn’t there more public awareness about DVT/PE? A lot of times blood clots are not named as the cause of death because a person may have also suffered from underlying conditions, such as cancer. There seems to be more public energy focused on educating people about heart disease, diabetes and cancer, yet organizations like the National Blood Clot Alliance (Stop the Clot) and Clot Connect are making great strides to raise awareness. More recently celebrities such as NACAR’S Champion Driver Brian Vickers, 2010 Olympian, and two time US Sprint Champion, and a Master Sprint World Champion in Speed Skating Rebekah Bradford and Reality TV Star NeNe Leakes have spoken out about their personal encounters with blood clots to help bring awareness to the public.
How…
  • Long does it take for someone to recover from a DVT/PE? Recovery from a DVT and/or PE varies greatly from individual to individual and can take anywhere from several weeks to a year or more. Some people will face complications from DVT, including Postthrombotic Syndrome (PTS) for the rest of their lives.
  • Can I prevent a blood clot?  The good news is, yes, there are many things you can do to help prevent a blood clot. Stay active. Immobility increases the risk of developing clots. If you’ve been sitting for a long period of time (such as at your desk or while traveling) stretch your legs often; Maintain an ideal body weight; Know your risk factors for developing a clot (see below) and discuss with your doctor; Know your family medical history; If you are hospitalized or planning for surgery, ask your about what will be done to prevent blood clots (such as being placed on blood thinners or wearing anti-embolism, also called compression, stockings).

Did you know?

  • One-half of clot patients will have long-term complications and one-third will have a recurrence within 10 years (Source).
  • An estimated $10 billion in medical costs in the US each year can be attributed to DVT and PE (Source).
  • Blood clots are a treatable condition and often preventable condition.

You may want to know

  • A PE is sometimes called a “heart-attack of the lungs.”
  • Deep red is the awareness ribbon color for blood clots, including DVT.
  • Red and white (together) is the awareness ribbon color for PE.
  • Burgundy is the awareness ribbon color for clotting disorders.

DVT (and subsequently PE) risk factors include

  • 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

Symptoms of a 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 a 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

What to do if you think you have a DVT

If you are at all concerned or have any of the symptoms listed above, make an appointment with your primary care physician or visit your local emergency room.

What to do if you think you have a PE

PE is life-threatening, seek emergency medical care immediately or call 9-1-1.

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There is hope for healing and you are not alone,

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