Focus on Blood Clot Awareness Month

March is Blood Clot Awareness Month, or BCAM, and if you or someone you care about has been affected by blood clots, you might be wondering what you can do to make a difference. Often times raising awareness starts with simply sharing your story with the people that you already know. You can share your story verbally with friends and family, in a written note, or more publicly on your Facebook Page or Instagram account. Social media – and our online connections – make it easier than ever to share important information with people in our communities, and with people all over the world.

If you don’t know where to start with sharing information about blood clots, or if you’ve never shared your story before, I’ve outlined four specific things you can focus on to easily help make a difference during Blood Clot Awareness Month, or anytime you want to raise awareness: Blood clot risk, blood clot signs and symptoms, blood clot recovery, and blood clot prevention.

Blood clot recovery is not often a focus of blood clot awareness, but it’s still a very important thing to discuss. This month, I’ll be sharing some of my thoughts about my personal recovery from a handwritten journal I kept for the first month of my recovery. I’ve never shared these thoughts before, but now I want to share them with you.

I’ll also be sharing some of your personal thoughts about how having a support system like Blood Clot Recovery Network has made a difference during your recovery. If you’re not already, connect with me on my public Facebook, Instagram and Twitter channels to hear my thoughts. Plus, if you’re a member of my private Facebook Community, I’ll be sharing some special things there, that I won’t be sharing anywhere else. If you’re not a member yet, join for free today.     

Are you ready? Let’s get focused on Blood Clot Awareness Month.   

Focus on Blood Clot Risk Factors

Blood clots can happen to anyone, no matter who you are. They affect about 900,000 people a year, and about 100,000 people a year die due to blood clots, in the United States alone. In some cases, people may have been able to prevent blood clots by knowing puts them at risk for one.

I had no idea that I could be at risk for a blood clot, so I didn’t think one could ever happen to me. One of the most important things you can share with the people you know is information about blood clot risks.

Know the major blood clot risk factors.
  • A family or personal history of blood clots
  • Recent major surgery or hospitalization
  • Total knee or hip replacement surgery
  • An inherited or acquired clotting condition
  • You have cancer, or are undergoing treatments for cancer
  • You are immobile for a long time (confined to bed, long-duration plane or car trip)
  • You are pregnant or have recently given birth
  • You use estrogen-based birth control methods or estrogen for the treatment of menopause symptoms

That’s not all. Learn more about blood clot risk factors.

Focus on Blood Clot Signs and Symptoms

Just like knowing your risk for blood clots, it is important to be able to recognize blood clot signs and symptoms. Looking back, what was most striking about my situation is that I had symptoms of a blood clot in my leg (pain) and in my lung (shortness of breath, chest pain) at the same time. I also had these symptoms for several days, and they got worse as time passed, not better. Eventually, I called my primary care physician who recognized my symptoms as blood clots and told me to go to the emergency room immediately. This month, take time to share the symptoms of blood clots with the people that you know.

Know the symptoms of a blood clot in the leg or arm, also known as deep vein thrombosis or DVT.
  • Swelling, often in one limb
  • Pain or tenderness, not caused by an injury (sometimes feels like a cramping, or “charley horse”)
  • Skin that is warm to the touch
  • Changes in your skin color, such as turning white, red, blue or purple
Know the symptoms of a blood clot in the lung, also known as pulmonary embolism or PE.
  • Shortness of breath
  • Chest pain or discomfort, especially if it worsens when you take a deep breath, cough or lie down
  • Feeling light headed or dizzy, or fainting
  • Fast or irregular heart rate, or a rapid pulse
  • Coughing, or coughing up blood
  • Some people experience severe anxiety or feel like “something is really wrong”

When they occur together, DVT and PE are known as venous thromboembolism, or VTE. Blood clots in the lungs can cause death by obstructing blood flow, so if you or someone you know experiences these symptoms, do not delay emergency medical treatment.

Learn more about what blood clots might feel like.

Focus on Blood Clot Recovery

Recovery from blood clots is different for everyone. It can take weeks, months or years to recover fully, and some people live with long-term complications from blood clots, such as post-thrombotic syndrome, chronic shortness of breath, or even debilitating anxiety. If you have experienced a blood clot, it’s important to let people know what you are going through … and it’s also important for you to realize that they might not understand what you are going through.

Throughout my recovery, I had many people – some of them close to me – who did not understand how I felt, or understand why I was still in pain so many months after my PE. Sometimes, it was hard to talk about because it was so personal. How much – or how little – you share about your recovery is entirely up to you. During my recovery, I often found that sharing less was more. I found out pretty quickly that all I could do was share information about my situation, and if the people in my personal life didn’t understand, I moved on to talking with a community of my peers who knew exactly what I was going through.

Sometimes, sharing just a few general things about blood clot recovery can be helpful.
  • It’s different for everyone, and can include physical and emotional healing
  • Recovery can take a long time, but there’s no set time line
  • It’s not like a healing from a cold or a broken bone, it’s more like healing from major trauma
  • Some people require ongoing treatment for blood clots, which may involve taking medication and going to frequent doctor visits
  • Sometimes, people who are recovering may look normal on the outside, but they’re still healing on the inside
  • Blood clots are painful

Read more important things about what recovery from a blood clot can be like.

Focus on Blood Clot Prevention

It is true that not all blood clots can be prevented. About 30 percent of all blood clots that occur do not have a cause, or a known risk factor. However, there are several important things that you can do to prevent blood clots from happening, or from happening again.

The most important things that you can do to prevent blood clots are simple, and sharing them is an important part of blood clot awareness. If I had known or done these things in my situation, it may not have been as bad as it was.

Everyone can take simple steps to help prevent life-threatening blood clots.
  • Know your risk for blood clots. If you know your risk for blood clots or know when you might be in a situation that puts you at risk for blood clots like surgery or pregnancy, you can take additional steps to prevent blood clots. It is true that knowledge is power, or key, even when it comes to preventing blood clots. If you don’t know if you could be at risk, talk to your doctor about your concerns.
  • Know the signs and symptoms of blood clots. If you know the signs and symptoms of blood clots, you can seek help, hopefully before you find yourself in a life-threatening situation.
  • Know when to seek medical attention. If you think you might have a blood clots, seek help from your doctor or the hospital immediately. Don’t wait to see if it gets worse – or better. Get checked out sooner rather than later.

Learn more about how to prevent blood clots.

If you have already had a blood clot, there are some important things you can do to prevent future blood clots.
  • Take your medication as prescribed. The most common cause of blood clot recurrence is not taking your medication. If you’re struggling with your treatment plan, or side effects, talk to your doctor about your treatment options.
  • If you are going to be having surgery or a medical procedure, talk to your doctor about your risks for blood clots, and your risk for bleeding. Doctors have to carefully balance your bleeding and clotting risks. Don’t assume everyone knows your health history if you haven’t told them, and plan ahead if you can.
  • If you are pregnant or planning a pregnancy, talk to your doctor too. It is possible for women with a history of blood clots, or clotting condition, to have successful pregnancies. Connect with your doctor ahead of time, if you can, to talk about ways to prevent blood clots, such as taking blood thinning medications for the duration of your pregnancy.

Sharing information is the most important thing any of us can do to raise blood clot awareness, and Blood Clot Awareness Month provides the perfect opportunity to do so. If you’re not sure where to start, tell your own story and as you do, make sure to include the focus points above. Together, we can make a difference.

There is hope for healing and you are not alone,

 

 


Reader Writes In: What plans do you have to help raise blood clot awareness this month? Share in the comments.


Do you want to do more? Discover your personal plan for raising blood clot awareness.


March is Blood Clot Awareness Month and the BCRN bracelets are back! Visit my Amazon Influencer Shop to get your gear. #sponsored


 

 

How to Raise Blood Clot Awareness: Discover Your Personal Plan

March – Blood Clot Awareness Month – has been a very eventful month for our community. This month has provided us with an opportunity to come together as one not only to raise blood clot awareness, but to share stories, ideas, and life-saving information about blood clots. This month, I have read countless stories from you. There have been stories from people who are celebrating survival and stories from people who grieving the loss of a precious loved one. I have spoken to people who had no idea that a blood clot could affect them, and I have spoken to people who work hard every day to share information about blood clot risks and signs and symptoms. I have spoken to people who are newly diagnosed with a DVT and/or PE, and I have spoken to people who have been battling blood clots for years. Some people have reached out for reassurance and support, while others have reached in to give back to the community that has helped them. Some people are scared, hurting, and overwhelmed, and others are joyful and reassuring. Some people are healed, some people are not. Some people are at the beginning of their journey, while others have not even stopped on their journey to look back until now.

What this month has done is brought us all together, in one place at one time, to raise a united voice about an issue that has deeply affected us all, in one way or another. And believe it or not, people are listening. You can see it in the comments, the shares, the likes and the readership here, and in all the other communities you are all a part of. If you doubt, simply type #BCAM into a social media or internet search bar, and see all the conversations that are have taken place this March, and are taking place right now (it’s not too late to jump in on any of them, either).

On this last day of Blood Clot Awareness Month, I want to leave you with something everlasting, something that you can take with you into the days, weeks, months, and even years ahead. Just because March is over, does not mean we should stop communicating, connecting and sharing about blood clots, or how they have impacted our lives. In fact, it is my hope that we use the momentum this month has created to continue talking about the issues that affect us all, and to continue alerting people who don’t know, about how dangerous blood clots are. Not only that, it is my hope that we continue to bring awareness to blood clots, and we continue to support the organizations, groups and communities that can effect change to ensure no one ever stops talking about blood clots, an often-overlooked public health concern. It is a concern that indeed affects us all.

Along with these thoughts, I am leaving you with a personalized plan for raising blood clot awareness. Anyone can do it, and anyone can make a difference. In fact, you already have. These are the things I did to start talking about blood clots, and today, my work here reaches over 25,000 people a month. Over 1,000 people a month receive my newsletter, and nearly 5,000 people connect with our community on Facebook every day. The good news is, you don’t have to start a blog or have a thousand followers to raise awareness. You can raise awareness where you are right now, with what you already have, regardless of what month it is, in just three simple steps. Here’s how:

 Step 1: Find your passion

After my blood clot, it seemed that my entire life fell apart. Everything in my life suffered – my job, my relationships, my health, and my happiness. I lost everything, and I had no idea how to get it back. I felt alone, scared, worthless, and even self-destructive at times. I was fighting a losing battle, and nothing anyone said or did, including myself, could make it better. It was the worst I have ever felt in my life.

I spent a lot of time trying to figure out what purpose any of my suffering had, and what my purpose in life was. My attempts to discover this was futile, leading me to one dead-end answer after another. There was no justification for the suffering I was going through. There was no explanation for why I had lost everything. There was nothing I could possible give back to a body – and a world – that had treated me so cruelly.

Then one day, I stopped looking for a purpose, and I started listening. I wasn’t the only one who had been through a DVT and PE diagnosis. As it turned out, there were a lot of people out there who had also lost everything, just like me. There were a lot of people out there who had no idea what had happened to them, or why. Things started to shift in my mind, and I began to focus on what I believed was my passion: Helping other people through a blood clot diagnosis and recovery. I became determined to be the guide that I wished I had after my experience. I started Blood Clot Recovery Network – not even sure if anyone would read it. But, people did read it, a lot of people, and my work here continued to grow. Over the years, my work here has led to speaking engagements, freelance writing opportunities, advocacy events, and eventually, my career in the same field.

When I look back from where I am now, to where I was then, I still cannot believe one thing sometimes: My passion to lead me to my purpose.

If your passion leads you to blood clot awareness, you can: Talk about your experience, write about your experience (publicly or privately), tell everyone you know about blood clot signs and symptoms, tell everyone you know that they could be at risk for a deadly blood clot (and tell them why), educate other people about how to prevent blood clots, and get involved with patient advocacy groups programs and services. With the far-reaching impact of social media today, anyone can make a difference, and anyone can share their story. By sharing our stories, we share facts about blood clots. Facts that matter. The possibilities are virtually limitless. Use your social media platforms – and your voice – to make a difference. Do as much – or as little – as you can or want to.

Step 2: Let nearly everything that you do be to help someone else   

After my blood clot diagnosis, I felt worthless. It is hard for me to describe just how worthless I felt, in fact. It was unlike anything I had felt before, or anything I have felt since. I thought it would never get any better, and I thought there was nothing I could ever do to feel self-worth again. To sum it up, I couldn’t figure out what I had not died, because I had no reason to live anymore, I felt so hopeless.

Slowly, and not without pain and heartache, I started to realize that I was not worthless, and there were things I could do. These things came primarily in the form of helping other people, and were things I was already starting to do. Whether it be sharing my story, sharing my experience in an online forum, telling someone about what my PE felt like, or simply letting someone else know I felt the same, hopeless way that they did – I was helping someone else. How do I know that? People started to tell me, even a simple “Thank you,” is evidence that you have made a difference. People would say, “I didn’t know this could happen to me!” I started to realize, that because of me, now they did know a blood clot could happen to them. Never underestimate the power of helping another human being, especially during their darkest hour.

Ways you can help other people: Share your story, share information about blood clots, share information about recovery, tell your friends and family about what you are going through (if they don’t listen – that’s okay – they can save this for later), get involved in online support groups and forums, and tell your doctors about what you are experiencing after a blood clot diagnosis.  

Step 3: Always remember that there is hope for healing from blood clots

Each day, I talk to numerous people who are at different stages of their recovery. Some people are at the very beginning – they don’t even know they have recovery to do – and some people are far, far removed from the horrible things that happened to them – yet, they still have a story to tell. Some people have been recovering for a week, while others have been recovering for three years. Each of us is different.

I am often asked, “How far are you in your recovery from blood clots?” It has been four, almost five, years since my DVT and PE, and now, I consider myself healed. Sure, I will always have medication to manage and things to take into consideration that I never did prior to my diagnosis, but I am through the hard part, and I have seen that there is life – and purpose – on the other side of blood clots. There is beauty and healing and compassion and freedom from pain and suffering.

For some people, healing takes a lot longer, and still some people seem to struggle their entire lives. I don’t believe everyone moves through recovery with the same outcomes, but I do believe there is hope for healing. That healing might not look the same for all of us, but it is there.

What helped me heal more than anything, was helping other people heal. Each day, I try to remember that in the work that I do. Helping other people is healing – for me and hopefully, for them too.

What you can do to help people heal: Share your experience, share your struggles, share your joy, let other people know they are not alone, invite them to join you in the online groups and communities, set up a weekly check-in email or message with someone you have connected with, and learn as much as you can about blood clots.

There you have it, your personal plan to raise blood clot awareness and to share life-saving information about blood clots. Take this information, think about it, and begin making a difference when and where you can. You are a valuable person, you have a lot to contribute on this subject. We all do. When you have been affected by something like blood clots, awareness is ongoing. There is not right or wrong way to do it, when it comes to your personal story. I know you can and will make a difference, because you already have.

There is hope for healing and you are not alone,

 

 


Reader Writes In: How are you going to raise awareness? What is a part of your personal awareness-building plan?


That’s Called Hope: A special message for you during Blood Clot Awareness Month


Want more BCAM information? Find out why blood clot #AwarenessMatters.

 

Hope: A Special Message for You During Blood Clot Awareness Month

Nearly five years ago, my life changed forever when I suffered from a blood clot in my leg and in my lung. I went from being an active runner, to needing an oxygen tank to breathe. I spent several days in the hospital – my life in the balance – while doctors tried to figure out what was wrong with me. Up until that time, I thought blood clots only happened to old people who were sick, or who weren’t able to move around very much. I was 29 years old, not 89.

March – Blood Clot Awareness Month – serves as a prime opportunity to talk about blood clots. Each year, about 900,000 people a year are affected by blood clots in the U.S. alone. If a blood clot starts in your leg, like mine did – also known as deep vein thrombosis or DVT – and then travels to your lung – also known as a pulmonary embolism, or PE – it can kill you. About 100,000 people die every year due to a blood clot. t can also cause damage to your vital organs, like your heart and lungs. Blood clots – both in my leg and in my lung – were the most physically painful things I have ever experienced in my life. Quite frankly, it felt like I was dying – maybe because I was. The scary thing is, I didn’t even know that I was at risk for a blood clot, or that one could happen to me.

Know Your Risk for Blood Clots

Many things can place you at risk for a blood clot. Some of the major risk factors are hospitalization or surgery, hormonal birth control, pregnancy, treatment of menopause symptoms with estrogen, traumatic injury to the bone or muscle, a family history of blood clots, and sitting for long periods or best rest, just to name a few. Mine were caused by estrogen-based birth control and also the clotting condition antiphospholipid syndrome, which I will have to treat for the rest of my life. If you don’t know if you are at risk for a blood clot, find out right now. Speak with your doctor about your risk, and learn more about how you can prevent blood clots. Blood clots are preventable, and even treatable if detected early.

Know the Signs and Symptoms of Blood Clots

Just as important as knowing your risk for blood clots, is knowing the signs and symptoms of blood clots. I had no idea that the pain I felt in my leg – it felt like someone had the fleshy part behind my left knee in a vice that kept getting tighter – was a symptom of a blood clot. It hurt when I walked, the pain radiated down my leg to my foot. The pain did not go away with rest, elevation, ice, or even Tylenol. I did not know – and this is the scary part – that my inability to lay down flat, take deep breaths, or speak in full sentences was a sign of a life-threatening blood clot in my lung. Thank goodness, my primary care physician did, and he instructed me to the nearest Emergency Room without delay. I tried to live my life normally for two days before I went to the hospital, barely able to walk or breathe by that time. The admitting physician told me I would not have survived for a third day. If you don’t know the signs and symptoms of blood clots, learn about them right now.

I was in intensive care for several days as doctors worked to figure out why I was so sick. They worked to stabilize my heart, my lungs, my breathing and various levels and counts in my blood. I was discharged with a wheelchair and an oxygen tank, and I thought it was all over. What I did not know was that my journey had really only just begun. I spent a total of two years recovering from the physical damage that was done to my body, and nearly another year recovering from the emotional damage that was done to my mind.

Recovery: Not Just a Physical Journey

The emotional side of recovery is what I want to talk to you about this March. It’s the part that gets left out most often, if not entirely ignored in some cases. Sometimes, people don’t understand. Even people that we know and trust, like our family, our friends, maybe even our doctors.

People ask me all the time, “How did you survive?” To be honest with you, I have spent years thinking about my answer to this question. First, I had to ponder, did I really survive? People survive physical things that push them to their limits every day – floods, fires, animal attacks, being lost in the wilderness, and car accidents, for example. I believe some people even survive illnesses and diseases. After thinking about these types of situations versus my own, though, I don’t think I actually survived my blood clot – not in the same way. Surviving my blood clot was completely out of my hands. It was in the hands of my doctors, and perhaps even more importantly, a higher power – for me, it’s God – who wanted me to still be on this Earth. You see, I didn’t actually understand I might be dying, so in some respects, I couldn’t make the conscious decision to survive my ordeal.

What I did was overcome. After my pulmonary embolism, life became brutally unfair, and I dealt with a lot more than some people will ever have to deal with in their entire life. I lost a lot, nearly everything, and I experienced grief unlike any I had ever felt before. I lost my friends, my job, my medical insurance, my self-esteem, and my confidence – to name just a few things. I was in more debt than I could have ever imagined, more sick than I knew was even possible, and the blows just kept coming one after the other. I dealt with them one by one, battle by battle, fight by fight. Everything was a fight, it seemed. I tried my hardest to do what I could to improve my situation. Sometimes it did improve, sometimes it didn’t. Sometimes it got worse. Sometimes, I found, I had to accept the help of others to be able to help myself.   

What I did not do was give up, not completely. Now, this is not to say I didn’t throw in the towel on certain days, weeks, or even months, and swear I was done with it all. I did that. I did that a lot during my recovery. Yet, somehow, someway, I never gave up completely. I always found something to believe in. Even if that something was the thought that it couldn’t possibly get any worse. Then, when it did get worse, I thought, “It can’t get any worse than it is right now. Eventually it has to get better.” My dad told me the same thing, and I clung to that belief. He told me, “Someday, Sara, it all has to get better.” A few important things kept me going when I gave up on myself – my family, my dogs, music, and my writing. Without them, I would not be where I am today. 

Hope: A Special Message for You

Through all the loss and heartache and heartbreak, I always told myself there was something better on the horizon. The way I looked at it, if there wasn’t, then why was I still here? Back then – during those first weeks, months and years of recovery – you could have never convinced me that I would see better days. Yet, deep inside my heart, I believed there were better days ahead, even if it seemed like a child’s fairly tale at the time. That tiny, tiny ember never stopped burning, and I never stopped believing. I think that’s called hope. Hope for a better tomorrow, for less pain, for health, for wellness, for love, for peace, for forgiveness. Whatever it is that you need, there is hope that it will one day come to you. 

I am a different person than I was before my blood clot. I don’t think someone like me – or you – goes through a life-threatening illness and comes out the same on the other side. I also don’t think a person can understand that unless they have been through it themselves. This is the part of Blood Clot Awareness that is important for me to share: Surviving, overcoming or managing a blood clot is life-changing.

The second this that is important for me to share with you is: There is hope. There is always hope. Even when you hurt more than you ever thought possible, cry more than you ever thought you would, have reached the end of your rope, lost everything, are alone, or have a broken heart. Even when it’s all over and you have nowhere to turn – there is hope. There is always hope. Find something – no matter how small that something is – to cling on to, and cling to it with all of the strength you have left. Whether it be God, your spouse, your parents, your children, your pet, yourself, your garden, your journal, your favorite song, your favorite book, your home, your memories, your dreams – hold on to it and don’t let go. Don’t ever let go of hope. If you can’t find something to cling to, here it is: There is hope.

There is hope for healing and you are not alone,

 

 


Reader Writes In: What is the hope that you hold on to? What is one thing you want to share during Blood Clot Awareness Month? How did you survive or overcome a blood clot?


March is Blood Clot Awareness Month (BCAM). Get the information that everyone needs to know.


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What does it feel like to recover from a blood clot?

What does it feel like to recover from a blood clot cover

After I was first diagnosed with a blood clot in 2012, I was scared, lonely and ultimately terrified of what would happen to me. Doctors and specialists were telling me repeatedly that I was “lucky to be alive,” but I was in so much pain and distress I felt far from lucky. I was grief-stricken with loss and heartache and felt nothing like myself anymore. Truth be told, I went through a long period of thinking I would rather not live to see another day if it meant the pain would end. The physical pain from my pulmonary embolism (PE or blood clot in the lung) and deep vein thrombosis (DVT or blood clot in my leg) was the worst I have ever experienced in my life. The physical recovery period was the longest I have ever faced in my life. If you don’t know what recovery from a pulmonary embolism looks like, read this post to find out more about it from my perspective.

In those early days, I searched the internet for more information about recovery – and disappointingly found very little, which is one of the reasons I decided to start this blog – to help other people like me. Today, there is much more information on the internet, but still, I feel al great deal of resources are lacking, particularly when it comes to emotional and psychological recovery. Emotionally, surviving a PE was devastating for me and I still struggle with anxiety, depression, fear and guilt to this day, nearly four years later. So, what does recovery from a PE feel like? Let’s talk about it.

Recovery from a pulmonary embolism feels overwhelming. I don’t know where to start with the overwhelming part of recovery because it is so – overwhelming. For me, it started with a complete change in how I cared for myself and monitored my health. I was diagnosed with antiphospholupid syndrome – a disease I had never heard of, let alone understood – and with that came a new routine of INR blood draws, weekly doctor’s appointments, new specialists and regular exams. I had to mange a constantly changing medication schedule between myself, the doctor and the pharmacy. All of these physical things transformed into an emotional upheaval that I was not prepared to deal with in addition to being physically ill. I had no idea what was happening or what was going to happen. In just a few days, I felt like I lost complete control of myself, my thoughts and my life and there was no conceivable way to regain control. In fact, there would not be for the immediate months ahead.

Recovery from a pulmonary embolism feels frightening. I have never been more terrified than when I experienced my DVT and PE. Simply put: It’s scary to hear you should have died or that you almost died or that it’s a wonder you are still alive. It’s just as frightening to hear there is no immediate resolution to your situation other to wait and see what happens.

Recovery from a pulmonary embolism feels lonely. I was immediately isolated after my pulmonary embolism if for no other reason than no one I knew had ever experienced a PE themselves. I had no one to talk to about my pain or feelings. I had no one to tell me it would get better, or worse, or anything. I had no one to tell me what I was experiencing was normal or abnormal. I was just alone. The more alone I felt, the farther into isolation I sank, until I didn’t even want to see my family or friends. If no one could understand what I was going through, which is how I felt, it was better to be alone rather than spend the energy trying to explain a complicated recovery just to have the person say, “That sucks, when will you get better?”

Recovery from a pulmonary embolism feels anxious. I have always been an anxious person, but my anxiety skyrocketed after my PE – I felt like I was in a constant state of distress. My worry seemed limitless: Was I having another PE? Would I have another PE? Would I survive another PE? Would my husband or dad or sister or friend have a PE? Was that pain in my leg a new blood clot? Was the pain in my head a blood clot? Was the bump on my arm a blood clot? Was there a blood clot somewhere in my body I didn’t know about? What if my leg stopped working? What if I stopped breathing overnight? What if I never drove again? Ran again? Worked again? Cooked again? Walked up the stairs again? The scenarios replayed in my mind constantly and sent me into a continual state of panic (read this post for more about panic attacks post-PE).

Recovery from a pulmonary embolism feels like grief. The discovery of a life-threatening illness or disabling condition and/or bodily injury are commonly overlooked causes of emotional and psychological trauma (source) and yet, they are legitimate sources of trauma. Surviving a blood clot – remember a DVT can cause a PE which is life-threatening – is a traumatic event. It is normal to go through a grieving process following trauma because you have experienced loss, no matter how temporary and regardless of if you ever gain those losses back. I felt like my whole world and identity was lost – I lost my ability to run, my job, relationships, security and trust in my body, to name a few things. This loss was devastating emotionally, not unlike experiencing the loss of a loved one.

what does it feel like to recover pin

Psychological and emotional reactions to trauma can include, but are not limited to feeling: sad, hopeless, numb, disoriented, withdrawal, confusion, anxiety, fear, anger, confusion, irritability, mood swings, disbelief, shock, guilt, self-blame, survivor’s guilt, paralyzing fear, trouble relating to others and/or difficulty concentrating (source). You are normal if you feel these things.

A lot of bad feelings, right? Absolutely – overwhelming, frightening, anxious and incredibly sad feelings. The better news is, there are some things you can do right now to help cope with these feelings. In time, I have found the feelings get better. I no longer experience extreme fear, loss or isolation. And while I’m still working on some things, I am hopeful that I will continue healing.

  • Talk to your doctor and ask questions. Do not be afraid to ask your medical team for assistance, answers, a medication or a referral to speak to someone about what you are experiencing or feeling. Some things you can do now: read about DVT and PE; make a treatment plan with your physician; take your treatment plan one step at a time; read about other people’s experiences with DVT and PE.
  • Don’t isolate yourself. Find someone who understands, which is not easy. Some things you can do now: Utilize BCRN discussion groups; join online discussion communities; find a local support or social group; help someone else understand their feelings through sharing your own experiences.
  • Accept the process. For me, anxiety is lessened by the fact that know I know the signs, symptoms and risk factors for DVT and PE. If it happens again, maybe I will be better prepared the next time. Some things you can do now: Familiarize yourself with your risk factors and talk to your doctor about ways to reduce that risk; allow yourself to feel anxious; find an activity that helps you feel calm (I like to listen to music or write); be patient with your feelings.
  • Take care of yourself. You survived, remember? Your body and emotions need some tender loving care to get through the recovery period. Some things you can do now: Allow yourself ample time to rest; break large tasks into small, manageable ones and congratulate yourself as you achieve them; consider seeking professional guidance (that’s okay) to talk about what you are feeling; take steps to reduce stress, eat a well-balanced diet; keep moving, even if it is from your seat; engage in your follow-up care; do something you enjoy.
  • Treat yourself kindly. It’s not a race to get better – and your body and emotions may need more time to recover than you want them to. Some things you can do now: Be aware of the way you talk to yourself; allow yourself to acknowledge what you are feeling – it is okay to feel this way.

Reader Writes In: What does recovery from a blood clot feel like for you? How do you manage or address your feelings?

There is hope for healing and you are not alone,

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BCRN Awareness Matters

 

Raising Awareness with Kevin Nealon

Kevin Nealon Cover

You may know Kevin Nealon from his infectious comedies including Happy Gilmore, The Wedding Singer, Daddy Day Care and Anger Management or perhaps as a former Saturday Night Live cast member (1986-1995). Or, maybe you have seen him more recently on Showtime’s Golden Globe winning hit series Weeds.

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What you may not know is that Kevin is also an atrial fibrillation – or AFib – survivor. Just like so many of you, Kevin has battled a life-threatening medical crisis and also like so many of you, he is passionate about sharing his story to help other patients facing a diagnosis of AFib or who are facing a treatment of blood thinners as a result of blood clots, heart attack or stroke. Kevin has partnered with Mended Hearts, a national non-profit organization committed to providing peer-to-peer cardiac support for survivors of AFib and their caregivers from diagnosis to recovery, and Janssen Pharmaceuticals during March to help raise awareness about blood clots.

Each year up to 900,000 Americans experience a blood clot (DVT or PE), resulting in up to 300,000 deaths. Blood clots do not discriminate based on age, sex, lifestyle – or even fame, as in the case of Kevin. AFib is an irregular, or fluttering, heartbeat that puts people who have the condition at a five times greater risk for a blood clot that can cause a potentially fatal stroke. And in fact, AFib accounts for 15 to 20 percent of all strokes. It is estimated that 2.7 million people are diagnosed with AFib and many more do not even know it (Source).

While these are frightening statistics to say the least, speaking to Kevin about AFib was like talking to an old friend and his passion for raising awareness and ensuring that others do not feel alone as a result of their diagnosis and recovery is the resounding message he conveys.

“I love talking to people about the same health issues,” Kevin said, “It creates an instant connection.

Kevin was swimming in Mexico with his then girlfriend several years ago when he had a racing heart that was concerning enough to cause him to seek medical attention at the hospital. He thought he may be having a heart attack.

“In the hospital,” he said, “I joked about having to use the paddles on me to restart my heart. And then I found out how serious my condition was. They put me out and when I woke up the cardiologist told me the paddles didn’t work.”

Once back at home in Los Angeles, Kevin was diagnosed with AFib, which was an extremely emotional time for him.

“It was so upsetting to me emotionally and it really affected my life,” he recalls, “I was playing less basketball and missing out on playing with me son and that really started to affect me. When you have a family, you really want to be around.” Kevin remembered being very worried because AFib changed his thinking about his entire life and his previously active lifestyle.

As part of his treatment plan, Kevin was initially placed on Warfarin to prevent blood clots, which were the biggest and most concerning risk of AFib to him because of the possibility of stroke.

“I did not want to end up with a stroke,” Kevin said.

Kevin eventually switched to taking Xarelto after speaking to his doctor about his lifestyle and needs. For Kevin, a vegetarian, Xarelto allows him the freedom from known dietary restrictions and the freedom to travel to numerous appearances throughout the year without the constant need for blood monitoring.

His resounding message is that facing a life-altering medical condition is something we, together as advocates, can overcome.

“It’s not the end of the world,” Kevin says, “You can live again.”

Kevin advocates for finding a doctor you believe in, as he did, and to remain in constant communication with your medical team about treatment options.

“Ask your doctors about the benefits and risks of the blood thinners available to you and do what works for you.”

Kevin and Janssen Pharmaceuticals, along with Mended Hearts and myself, have teamed up this month to raise awareness about blood clots and blood clot related stroke and deliver a message of hope to those who are suffering from AFib, blood clots and stroke.

And, the good news is, you can help us raise awareness too. Visit www.Drive4Clots.com to watch a video featuring Kevin’s story (along with the stories of NASCAR’s Brian Vickers and golf legend Arnold Palmer), and for every view received, Janssen will make a donation to Mended Hearts. You can also make a difference for patients living with or who are at risk for blood clots and stroke by sharing this message.

Share this message on Facebook:

Visit www.Drive4Clots.com to watch a video featuring actor/comedian Kevin Nealon’s story (along with the stories of NASCAR’s Brian Vickers and golf legend Arnold Palmer), and for every view received, Janssen will make a donation to Mended Hearts to help raise awareness about AFib, blood clots and stroke during #BloodClot Awareness Month.

Share this message on Twitter:

Visit to watch videos featuring real stories about blood clot survivors and make a difference. #BloodClot Awareness

Share your story. Did you know Kevin Nealon’s story? Have you or someone you know been diagnosed with AFib? What are you doing to make a difference this month?

There is hope for healing and you are not alone,

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Thank you to Janssen Pharmaceuticals, Kevin Nealon and Michele Packard-Milam of Mended Hearts for the opportunity to discuss AFib, blood clots and blood clot related stroke and raise awareness during Blood Clot Awareness Month and beyond. Together we can make a difference.

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/