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.

 

Patient Story: A Double Whammy by Ruth

This patient story “A Double Whammy” was written by Ruth Work for the Blood Clot Recovery Network Blog.

I am a 51-year-old clinic nurse with rheumatoid arthritis (RA). I’m on those nasty meds that keep me moving, but they also make me immune suppressed. At the beginning of August 2016, I was feeling run down, and I thought it was my allergies acting up. I took my RA meds on a Friday night, and I woke up the next morning feeling like I’d been hit with a mac truck, like you do when you have influenza. I went to urgent care, and I was diagnosed with a sinus infection and sent home with an antibiotic. The next morning, I woke up feeling worse, my fever had gone up and the lymph nodes in my neck had blossomed. I called the Urgent Care with this update and was instructed to go to the ER.

After three hours in the ER, I was admitted with pan-sinusitis (all sinus cavities infected) that had gone septic. The next day, I had a CT scan of my neck, which showed one of the lymph nodes suspicious for malignancy. The next day, I had more scans looking for other malignancies. On day three, I had surgery to remove the suspicious lymph node. I finally got to go home on day four to await pathology results.

During this hospitalization, the doctors did everything right. I was on birth control pills for menopausal symptoms, and they took my pills away. I received Lovenox injections, wore the Jobst compression stockings, and had the pressure booties following surgery. They were being proactive which I thought was overkill at the time. The surgeon called me the next day and told me the local pathologist was leaning towards a lymphoma diagnosis but to confirm, they were sending my specimen on for further review.  In the meantime, I was instructed to make an appointment with the oncologist so we could get things rolling after the final pathology report came back. I saw the oncologist on August 12, 2016, and I was told I did not have lymphoma! What a blessing! But, four days later, I was huffing and puffing just trying to make my bed.

I called my primary doctor who instructed me to go to the ER to check things out. That day, August 16, 2016, my life changed so drastically! A positive D-Dimer and CT revealed extensive bilateral PEs. I was admitted again, started on Lovenox shots again then started oral Eliquis. I was sent home and told to do nothing. I was terrified! I was afraid to even sneeze for fear I may throw a clot and die. As many others have commented, even getting up to use the restroom was a major feat. As a nurse, I was familiar with DVT and Pes, but I was not aware at how long a recovery it can be. It has been a very slow go for me. I no longer make plans, I make goals. Some days I make my goals, some days I don’t. Little things like walking to the mailbox was a huge accomplishment. I returned to work on a very limited basis last September. My doctor was very protective, which I greatly appreciated. Unfortunately, I was not able to increase my hours to my normal work schedule in November. I was so fatigued, continued to be short of breath, and heart palpitation had also set in. Since I wasn’t getting better fast enough, I was placed on a ‘layoff’ status since I was not at this job a year yet, and I was not protected by Family Medical Leave Act (FMLA). I was put on ‘layoff’ for 90 days, and if I was not placed in another position by the end of 90 days, my employment would ‘conclude.’

I just can’t believe everything that has happened these past few months! It was the perfect storm, how one issue led to another issue. Due to the sepsis, I had to go off my RA meds so my RA symptoms returned. Due to the blood thinner, I can’t take any anti-inflammatories. I have recently been able to start a different RA med, which is not helping. I’m trying to be patient and give it time to work, but I’m feeling very down lately. I’m sure it’s a combination of the slow PE recovery and the RA symptoms, a double whammy. I’m not able to do the things I used to, don’t have interest in many of the things I used to, and with anything that takes a lot of energy, count me out. It saddens me to lose my nursing job, but I understand why. How can I take care of my patients when I can barely take care of myself? I feel like I’ve let my co-workers down, and I’ve let my family down. Six months later and there are so many things I just can’t do. I guess I’m not a very patient person, but am trying to be. I’m usually a go getter and this has shaken me to my core.

I’ve learned that PE recovery isn’t just a physically recovery, but an emotional recovery, which I was not expecting. Through it all, I continue to make goals and I keep trying. My husband and I love to travel and being told I couldn’t travel for six months after my PEs has been so hard, especially with most of our family being out of state.

To celebrate making it to my six-month anniversary, we flew to see our kids. I was so scared, but determined. I knew what I needed to do, what not to do, what to watch for, but I was still scared. What if I got sick again? I am happy to share, our short flight to and from our kids and grandkids went great! I was really nervous before we left because I had bronchitis the three weeks prior to our trip. I kept thinking I was going to be fine by the time we left, but I can tell my lungs have changed. The day of our flight, I went to the doctor, the pharmacy, and then the airport.  With an antibiotic, steroid and inhaler on board, I made it. We had such a great time! I had the same nap time and bedtime as our grand-daughters, but that was okay. What a blessing to be with family again.

I went off my Eliquis after we returned home, and I have noticed I feel better since going off it. I seem to feel less fatigued. I had my genetic testing labs drawn last week, and I see my hematologist tomorrow to review the results. Due to my latest illness, I had to go off my RA meds again, and I am starting a new injection tomorrow. We will see if this one is more beneficial. Will see what happens next. I am taking it one day at a time!

My journey continues, but I am here for a reason. God has a plan for me and I will continue to take life one day at a time. I’m hoping to look back at this all a year from now and realize how far I’ve come, but right now, it’s still hard.


Reader Writes In: Has anyone else dealt with PE’s and RA? Share in the comments.


Editor’s Note: Thank you, Ruth, for sharing your story with BCRN. Connect with Ruth, or share your thoughts, in the comments below.


Read more Patient Stories from BCRN. Visit How to Share Your Story to share your story with Blood Clot Recovery Network.

Patient Story: Running Down A Road to Blood Clots by Rachel McCulloch

This patient story “Running Down A Road to Blood Clots” was written by Rachel McCulloch for the Blood Clot Recovery Network Blog.

It was October of 2015 when I got to run one of the biggest and most important races of my life, which was the Nike Women’s Half Marathon in San Francisco, California. The day of my race was amazing, inspirational, and in the end, I finished in pain with a knee injury. Flash forward to January of 2016, the pain had started to slowly intensify in my left knee, and I couldn’t take it anymore. After visiting my orthopedist, it was determined I had torn my meniscus and would need to have it surgically repaired. I was scheduled for arthroscopic surgery on February 2, 2016.

I was told it would be a super easy surgery and even easier recovery. I went into surgery and came out with no complications and feeling pretty good. The day after my surgery would be the day my life would change forever.

I woke up that morning with a very swollen foot and calf. I didn’t think anything of it, and attributed it to the surgery and the wrap that was protecting my sutures. I brushed off the swelling and went to my first physical therapy appointment that afternoon. After my physical therapist assessed my knee, she told me she was more concerned with the swelling and redness in my calf and foot.

My physical therapist told me I needed to go to the emergency room. My dad drove me straight to the ER and after being taken back for an ultrasound, it was discovered that I had a deep vein thrombosis, or DVT, in my calf. I was immediately put on Eliquis. I was able to go home after a few hours in the emergency room, but I had to go back the next day with shortness of breath and dizziness. After having a chest cat scan done, I was diagnosed with multiple blood clots in my lungs and was admitted to the ICU for further observation.

I remember clearly that first night in the hospital as I reflected on my life. In a matter of a few months I had gone from a very healthy active 29 year old woman to a very sick individual facing a life or death situation. I kept thinking, “How could this happen to me?” The doctors were able to run blood work in the ICU, which eventually revealed the true cause of my blood clots to be factor V Leiden, a genetic blood clotting disorder.

“Wait, I have factor V Leiden?,” I thought, “The same disease my grandma and grandpa have.” Why had this not been found earlier on in my life? Why had I not taken any precautions? What if I wouldn’t have run that race at all? Then maybe I wouldn’t be in this situation.

All of the whys and what ifs won’t change the fact that I had this happen to me. My life has changed forever, but I don’t look at what happened to me as a negative. I try to always remain positive.

Life is a precious gift that can be taken away so fast, it’s best to look at all of the good things in life and put the negative stuff behind us. The one question I get asked all the time is if I still run, and of course, the answer is yes.


Editor’s Note: Thank you, Rachel, for sharing your story with BCRN. Connect with Rachel, or share your thoughts, in the comments below.


Read more Patient Stories from BCRN.


Visit How to Share Your Story to share your story with Blood Clot Recovery Network.

Be Prepared for an Unexpected Health Crisis

Four years ago, I didn’t know the pain in my leg and in my chest, along with shortness of breath, were symptoms of life-threatening blood clots. I was incredibly lucky to get help for what I was feeling in time, and perhaps just hours before it was too late. This is especially true when you consider the fact that some people never experience symptoms of blood clots. They just don’t survive a blood clot in their lung, or pulmonary embolism. To say I survived what is an often silent, or invisible, killer is something that I think about quite often. Since my blood clot diagnosis and recovery, I have heard from countless people who have lost a friend of family member to a blood clot because they didn’t know they had one, they had no symptoms or they didn’t get medical care in time. It can feel impossible to be prepared for this type of unexpected health crisis.

To say I survived a silent killer is a large part of why I do the work that I do today. I hope that by sharing my story, I can help educate other people about not only the signs and symptoms of deadly blood clots, but also about their risk for one in the first place. I believe that knowledge is one of our best defenses against blood clots and knowing can help to save lives. Now that I know I am at risk for blood clots – and I know what they feel like – I will never delay seeking treatment for as long as I did. Two days of wondering what was going on nearly cost my life.

Carbon monoxide, also known as CO, is another often-ignored silent killer. It is a colorless, odorless, poisonous gas. Symptoms of carbon monoxide poisoning can include a dull headache, weakness, dizziness, nausea or vomiting, shortness of breath, confusion, blurred vision or loss of consciousness. CO poisoning is especially dangerous if you are sleeping or intoxicated, and is a medical emergency because symptoms can be subtle, but can also be deadly.

Those symptoms bring back some unhappy memories of what I experienced with my pulmonary embolism minus the severe pain. It was my hope to never feel anything that caused me great concern again. Yet, there I was on Saturday night, winding down and watching TV after dinner, when out of nowhere, I got a headache, felt dizzy, and felt nauseated. I shook my head around, trying to clear my eyes. The TV screen was blurry, and I suddenly felt out of place, or unsure of what was going on. Generally, my first thought would be “something is wrong with my INR,” but instead I thought, “It might be carbon monoxide poisoning.” I don’t know why I thought this. All I know is that I Googled the symptoms of CO poisoning (I know, never, ever do that) and the rest is history as we know it: I had carbon monoxide poisoning.

As it turns out, even more people experience CO poisoning that I realized. Per the U.S. Consumer Product Safety Commission Carbon Monoxide Info Center, more than 150 people in the Unites States die every year from accidental non-fire related CO poisoning. The U.S. Centers for Disease Control and Prevention states that an average of 430 people die in the U.S. a year due to CO poisoning and countless more are hospitalized due to symptoms. CO poisoning is often associated with consumer products, such as generators. Other products that can omit deadly CO include faulty, improperly-used or incorrectly-vented fuel-burning appliances such as furnaces, stoves, water heaters and fireplaces.

So, while I’m not exactly sure just how many people do die from carbon monoxide poisoning each year, I was exactly sure that I was going to be one of them. There was nothing that anyone could have said or done to convince me that I was not experiencing the symptoms of carbon monoxide poisoning. While I wasn’t running a generator, and I did not have a faulty or improperly installed stove, refrigerator, water heater, furnace or fireplace, I was certain I had missed something, somewhere, and one of these things was omitting odorless, tasteless, deadly gas directly into my bedroom. I was certain that when I went to sleep on Saturday night, I would not wake up on Sunday morning. The only thing the Internet could not tell me was if I had CO in my house.

When my husband came in from outside, shaking the snow off his boots, and proclaimed, “I feel funny in here, but fine outside,” that sealed my fate.

“I think we’re suffering from carbon monoxide poisoning,” I said. He promptly turned around and started lacing up his boots again.

“What are you doing?” I asked. He responded, “I know where this is going, you don’t have to tell me. We’re going to the store to buy a detector.”

Sure enough, at half past midnight on Sunday morning we were on our way to the closest store to find a carbon monoxide detector, but not just any carbon monoxide detector would do. We visited a total of three stores (thank goodness for 24-hour stores) before we found one that plugs in (and will therefore move when I am worried about another room in the house or work when the power goes out). Over an hour and over $40 later, I was back at home, eagerly reading the instructions to set it up. Much to my complete panic, it beeped wildly as soon as the back-up battery was installed, but soon settled on a “0” CO reading, and my sense of peace was restored. I must have been tired or dehydrated – or maybe I ate too much at dinner, much too late – and that’s why I didn’t feel good.

“So, we’re not dying of CO poisoning,” I said to my husband, thoroughly relieved. He replied, “I never thought we were,” equally relieved to be getting ready for bed. I proceeded to thank him profusely for trekking miles from home with me on a cold Saturday night just so I could have peace of mind. Okay, we didn’t trek – and I drove – but I am still grateful for his support in situations just like this.

I nestled into bed, a smile on my face, when one last thought crossed my mind: You’re crazy. I sat up like a lightning bolt, once again unable to relax. A thousand different thoughts entered my mind after that ranging from, “you don’t have every disease, ever” to “you might, you never know” to “you can’t tell anyone about this” to “that was probably a waste of $40” to “what if that $40 saves your life someday” to “you should probably have a CO detector in every room now” to “when was the last time you checked the smoke alarm.”

I only spoke one of them, “Do you think I’m crazy?” My husband answered from the darkness, “No, at least you know we aren’t dying of CO poisoning.” I waited for the “but,” the “and,” the “next time,” but nothing came.

Then he said, “Do you think you’re crazy?”

I didn’t answer him that night, but I laid awake for a while thinking about it before I came to one conclusion: No, I’m not crazy. But surviving something that can kill you – maybe even silently, with no warning – sure does change your perspective on things. I worry about more health-related things, I wonder if I have a health condition that isn’t easy to detect, I wonder if I am sick with something horrible I don’t know about, and yes, I sometimes think the tiniest inconsistency might mean something horrible is wrong with me. It can be maddening if I let it control me.

What I have also come to realize is that all I can do is be prepared, and if that means spending money to buy a detector so I don’t have to worry about carbon monoxide poisoning, then that is what it means. While having a CO detector might be pointless to someone else, it is invaluable to me to have peace of mind about one health condition I can’t otherwise control. Not unlike blood clots, I know my risk for CO poisoning, I know the signs and symptoms of CO poisoning, and I know how to protect myself and my family from it. This happens to be a health concern that was handled outside of a doctor’s office – my symptoms had subsided by the time we returned from the store – but even if it wasn’t: be prepared.

While the unexpected – and the unknown is scary – I think it is possible to be prepared for an unexpected health crisis. Talk to your doctor about your concerns, get your annual wellness and physical exams and tests, pay attention to what your body might be telling you, and take care of yourself to the best of your ability. If you do get sick or injured, have resources on hand to help you, know where to go to get the information you need. Know how your insurance works, how to get care if you don’t have any insurance, find a primary care physician you can rely on to help you get to the specialists you need to see, as soon as you need to see them. Whether you install a CO detector, quit smoking, start exercising, eat healthier, or wear a helmet riding a bike, be prepared to take care of the one and only you.

There is hope for healing and you are not alone,

 

 

 

 


Reader Writes In: Do you worry about health-related things more since your blood clot? How do you handle your anxiety?


What does recovery from a pulmonary embolism feel like? Get more info to share in this post.


Do you suffer from panic attacks? You’re not alone. Here are my tips for how to handle a panic attack after PE.

That one thing about blood clots everyone should know.

one-thing

When I was diagnosed with a blood clot and as I went through recovery, I was surprised how much I – and other people I knew – did not not know about blood clots. There was so much I wanted to share with people as I recovered – blood clots hurt, recovery took a long time and yes, you could have a blood clot if you were young, active and healthy. Sometimes, I wished I could just hand people a piece of paper (or several pieces of paper) that said, “Here, here is what you need to know about what I am going through right now. It’s not fun, it’s not easy, and yes, it takes a very long time. Here’s why.”

Have you ever felt that way too?

A number of weeks ago, I asked you a very important question on social media: What is the one thing about blood clots everyone should know? And you answered. 

If you have been diagnosed with a blood clot, it can be difficult to understand – and explain – what you are going through. Here are some thoughts about blood clots and blood clot recovery that you should know. These thoughts are compiled from people who have suffered from blood clots, or who know someone who has suffered from blood clots, as shared with www.BloodClotRecovery.net across a variety of social media channels.

You can also download and print these thoughts to read when you feel alone or to share with someone you know.

What is the one thing about blood clots everyone should know?

Blood clots cause pain.

It doesn’t always mean you’re going to die. I spent three days in the hospital scared I was going to die because I’d known two people who have died. A nurse and a wonderful doctor finally explained that while it was serious, and could have been fatal, I was going to be okay.

It takes time to heal and recover. Be gentle with yourself and listen to your body. It’s okay to rest – you’re not being lazy.

Blood clots are life changing.

Don’t ignore symptoms. It’s better to be safe and get checked out, then lose your life.

They can reoccur, even with proper medications and monitoring.

Listen to your body.

Anybody can get blood clots!

Don’t ignore blood clots – any one, of any age can get them.

They suck A** – just saying.

Definitely listen to your body, rest, ask a lot of questions, and see a psychologist, if needed. Having PEs as bad as mine were, it messed with me terribly.

You don’t always know you have blood clots….shortness of breath may be the only symptom you have!

Blood clots can cause anxiety, sometimes debilitating anxiety, for years to come. Talk to your doctor about that, and know you’re not alone.

It’s okay to cry.

Blood clots kill people.

You can have almost none of the “classic” symptoms, and still have blood clots, and you don’t always get an answer as to why they happened.

All I had was a pinch in my side. I had no idea that my life had forever changed that day.

Blood clots changed my life.

Not only did blood clots change my life in fear, but they changed how I am towards people. Anger, anxiety, depression – one day you think, “I’m okay,” and the next you’re in a panic. The second time around with PE, both due to giving birth, and I hate that this has happened to me. There needs to be a cure, but it feels like no one is even trying to find a cure. They tell you to pop a pill and send you on your way. Seriously.

Listen to what your body tells you, not what others tell you.

You will never be the person you were before. Be your best advocate. Ask any and all questions. Know that you aren’t alone. Listen to your body. It will get better!

This doesn’t happen to everyone, but it happened to me: A few days before my Pes, I had a strange feeling that I didn’t want to be alone, because for some reason, I thought I was going to die and I was afraid. I’ve read this happens to some people, so don’t ignore it, if you feel this. If you didn’t have it happen to you, I know it sounds crazy, but it’s real. Listen to your body and your mind.

You will have better days and bad days. Be thankful for the better ones.

Blood clots suck the life out of you.

It takes time to heal and post-clot anxiety is common. You don’t just start taking medication and everything is suddenly okay.

You may think you’ve just pulled a muscle.

You may look well on the outside, but there’s a lot going on inside and it changes people.

Blood clots are extremely painful.

The emotional side you have to deal with after is hard. Anger, anxiety, depression, etc. are all normal, but no advice is usually given to help with this, or it is not linked to what you have just been through. You have had a near death experience and it’s exhausting.

Pre-clot people should know that the condition even exist. Post-clot people should know everything about thrombosis, because your doctor might not know. We, the world, need more information put out in the commercial world. Way too little information is available for such a common, often fatal condition.

Thrombosis information should be as common as cancer and heart disease. Until I had my first DVT, I assumed it was no worse than a hiccup. I had heard of people (acquaintances, etc.) getting blood clots, but I never heard of it ever causing anyone any problems, and I never heard of anyone dying from them.

I had a DVT with no redness. I had a PE with no coughing.

I have a DVT and PE and it is not nice to go through for two years.

My DVT was asymptomatic below the knee. I only had one symptom: the sensation of a pebble in the back of my knee. A Doppler scan showed sluggish flow throughout my leg.

Blood clots can turn you into a hypochondriac!!! But it is always better to check.

Post-thrombotic (PTS) is hard to live with, but take I every day as it comes, being thankful I’m still here.

Blood clots can happen any time.

Blood clots left me without my brother and also ended my career!

Blood clots turn your life upside down…. the fear, the pain, the anxiety, the anger…. etc. I think about how close to death I was daily, and hope and pray that it doesn’t come back. I had bilateral PEs in December 2015, but it seems like yesterday. I have had so many trips to the ER and doctors afterwards, just because I am afraid that I have another. I am financially and emotionally drained.

Blood clots don’t discriminate! It’s not just surgery that causes clots. It’s not only immobility that contributes to the formation of clots. It doesn’t only happen in the elderly. Not all clots are in legs. People keep asking me, “Clots? Isn’t that what old people get after surgery while sitting around recovering?”

I’ve had two PEs. One with calf and chest pain. The second with no pain at all, just shortness of breath.

Just go to the ER, even if you think it is not a clot. Let go of the fear of going in for nothing.

When a group of doctors sit you in a room and tell you your diagnosis and anticoagulant therapy is your one and only option because the clots in the brain cannot be accessed surgically due to the high risk….You look at their discouraging eyes and realize all you can do is hope and fight. At any moment, you realize you can take your last breath, and all you have is this exact moment to live and breathe.

I’ve not had the easiest life. This though, was the experience that taught me about love, friendship, family, life, and that I was stronger than I ever thought.

It can happen to anyone, and you need to be strong throughout the whole recovery. Otherwise, you will feel lost and not have the courage to keep fighting through it all.

Even though the previous episode wasn’t that long for me, it still lingers in the back of my mind, when and how the next episode will be. Just one step, one day at a time. My main concern is the cost involved. If cost wasn’t a concern, I think that it would minimize a portion of our anxiety and just really concentrate on what is at hand.

Many people still do not know what they are or what the symptoms are – if you feel you may have them get to an ER as soon as possible! When you are unconscious you cannot describe your symptoms! Also, this is one of the most misunderstood medical problems.

How looooooooooooong recovery is… and sometimes you’re never the same.

Blood clots fundamentally change your outlook on life, which is not necessarily a bad thing.

My daughter has a better attitude towards life…for the most part.

It could happen to anyone, at any time!

They happen, but you can recover better than before.

It takes time to heal, even after the clot is gone.

Surviving one can cause a lot of anxiety, fear, and even panic. Don’t be afraid to seek psychiatric help or get counseling, and find someone that specializes in PTSD.

Anyone who has a blood, please join this group, Blood Clot Recovery Network.

There often aren’t answers.

Don’t be a hero, ask for help.

You don’t realize how close to death you are, but you can get better.

It can happen to you, and the only symptom may be a mild cramp-like feel, not a swollen, red, warm calf. Trust your instincts, and don’t be afraid to get checked out.

I never knew that pregnancy was such a high risk for blood clots. I think women should know that

I had six clots within 30 days of birth. I had no idea pregnancy was a bloody nightmare for sticky blood!

You can get swelling even after blood clots have gone.

Many any health care professionals aren’t well informed about blood clots. Blood Clot Recovery Network has been so helpful for me in learning others are going through similar struggles. You aren’t alone!

It can happen to anyone, at any time

Listen to your body!

I’m exhausted. Yes, even just getting dressed is too much, sometimes.

Age does not matter!

They could be deadly, if not treated

It can happen to anyone! You don’t have to be older or sick, it can literally happen to anyone, at any time, no one is excluded.

Anyone can get them!

You can survive.

Drink a lot of water, keep moving.

The symptoms and recovery differ for everyone.

Blood clots happen way more often than people think

There is no backsies when it comes to blood clots. Once you have one, the damage is done. Many survivors live with impairments from their clotting events.

Chronic pain in the leg after a clot can be devastating for so many. Things like sitting at a desk or flying are never the same.

There will be good and bad days.

Blood clots are life changing.

Don’t ignore the symptoms! Go to the ER and speak until someone listens! You don’t have to die from this.

Blood clots can happen to even the healthiest, most active people, out of nowhere. They need to be taken seriously.

We put on a happy face, even though we live with chronic pain.

It will be painful…you will be tired, a tired like nothing you felt before. People won’t understand, ignore them, and listen to your body.

You are your own best advocate. Research, ask questions, and get multiple opinions before settling on what just one doctor tells you.

It doesn’t matter how old you are; you can still get blood clots!

Recovery sucks!

In many cases, blood clots can be a sneaky killer. Mine was disguised as pleurisy, which could have cost my life. I didn’t go to my doctor until it was almost too late. I had no clue it was a life threatening blood clot.

Blood clots can be deadly.

When the doctor tells you it’s a bug bite and take some antibiotics, get a second opinion!

Blood clots can kill you.

Blood clots can happen to active teenagers!

Listen to yourself. If you know something is wrong, speak up, and don’t let your doctor’s just brush it off as nothing. Or in my case, the many times I brought up the different coloring and pain, doctors just said it was healing from my Achilles tendon surgery.

It can take much, much longer than you think to recover.

Blood clots can kill you, and recovery can leave you with lots of health issues.

Blood clots hurt.

Blood clots are life changing. It was the scariest time of my life, and continues to make me worried sick that it could all happen again! Also, the chronic, debilitating pain…..18 months for me, and I’m in chronic pain most days.

Blood clots aren’t always painful. I had one that felt like a small bruise, and it was dismissed, as I wasn’t screaming. To be fair, all my other blood clots were so horrifically painful, I thought I was going to pass out, and they were still missed.

Blood clots for me changed my whole life. They made me realize life’s too short. I think all your comments taught me that I’m not alone. Recovery is long. I am on medication for rest of life, and my health issues are endless, but I’m alive. Some people aren’t so lucky.

The fear never leaves you.

When discovered, you need to advocate for yourself and find the right doctors who will listen.

Blood clots can happen to anyone!!!!!

Listen to your body. If you think there might be something wrong, stop worrying that they will think you are crazy and spend the money, and go to the doctor. I had a small pinch in my chest, that was it. That small pinch saved my life, because I knew it wasn’t right.

Blood clots can happen to anyone

Blood clots are a silent killer.

I was told that a lot of doctors missed my diagnosis – a blood clot in the brain, and inflammation in my brain and spine. They asked what led me to go in, and I just knew that I needed to go in and that something wasn’t right. I am blessed to be alive. It has changed my outlook on a lot of things in life.

I thought I was starting to have panic attacks because of the palpitations and shortness of breath. I drove to my doctor’s surgery, only to be asked, “How long have your lips been blue?” I was taken to the hospital and resuscitated twice. After 14 months, I still get the odd twinge, but I’m on thinners for life.

The recovery process is very slow, and extremely difficult, and a huge emotional roller coaster, which includes a great amount of fear. Doctors talk about the physical aspects, but the emotional side is incredibly hard. Blood clots alter your entire life, and you are not alone. If you have survived, you won.

It doesn’t always take a warm leg for a blood clot to be there. If it’s very swollen, flush red when you stand, and very sensitive to heat, cold, and water, please have it checked out. Just because my calf wasn’t warm, even with a positive D-dimer, three doctors ruled a clot, because it wasn’t warm. Yet, three DVTs were later found in the same leg. Trust your instincts. I said outright it was a blood clot, and the doctors didn’t believe me. If someone says no, it’s not a blood clot, get a second opinion to be sure. If I did, it wouldn’t have broken off and went into both of my lungs. You know your body best.

Always get a second opinion, and if there is one, there could always be another one. The first time I had two blood clots in my brain, with more tests, they found a massive clot in my lung that could have killed me. This time, they found one in my aorta, and the doctor didn’t seem worried. They gave me a very low dose of blood thinner, I saw a new doctor who ran tests, and they found that I had two more blood clots in my brain. Ask a lot of questions, and if they don’t want to answer, find a new doctor!

Being a survivor of PE made me a better person.

Blood clots kill!

Homan’s Sign is discomfort behind the knee on forced dorsiflexion of the foot, and a sign of thrombosis in the lower limb. Everyone’s symptoms are different. This is how I knew that I had a potential problem.

I was diagnosed with a PE in June with no symptoms. I tested positive for factor V Leiden, a genetic blood disorder. If you have been diagnosed with a blood clot, get tested for blood disorders!

Blood clots are life changing, and not in a good way either! Be proactive in your care. Post-thrombotic syndrome is no fun.

If you have pain or difficulty breathing and shortness of breath, get light headed and dizzy, you could have pulmonary embolisms. I had them in the base of both lungs, and DVTs from my hips to my knees in both legs. I also have factor V Leiden. I recommend that anyone who has blood clots, get checked for blood disorders, deficiencies, and if you have any symptoms of blood clots, go to the ER right away.

If you are going through recovery, hang in there. I’m a survivor, and it’s going to get better with positive energies and a positive outlook, babe.

As some have said the emotional mental roller coaster after surviving may be one of the hardest things you’ll ever deal with. Also, if you’re planning to go on oral birth control, request to get tested for any blood disorders beforehand.

The recovery process is slow, long, and scary. And sometimes we suffer from PTSD after. I didn’t realize that I did until a doctor told me that!

Blood clots happen to young, healthy people for what seems like no reason at all (Look at people like Serena Williams, Nick Cannon, and Chris Bosch). They can happen to anyone, at any time.

There is hope for healing and you are not alone,

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Heading to your first follow-up appointment? Take these questions to your doctor’s appointment.

Patient Story: My Blood Clot Story by Denise Watrous

watrous-denise-photo_finalIn August of 2006, I was 32 years old. I woke up on a Tuesday morning with some mild shoulder pain. It was a dull ache. It hurt in the front, right above my clavicle bone, and all the way through to my back. I thought I must have slept on it wrong so I went about my day, and I took my then three-year-old twins to speech therapy then the mall. I then had lunch with a friend. I complained about my shoulder pain, and she lovingly said “Take an Advil and shut the hell up!”

As the day went on, the pain got worse. By dinner time, the pain was intense, and I noticed that it was harder to breathe. About an hour after that, I noticed that my heart also hurt, but since I have mitral valve prolapse (MVP), I didn’t pay much attention. At about 8:00 p.m., I noticed that the pain was very bad. My heart hurt, it was hard to breathe, and my jaw and left arm hurt. I thought I was having a heart attack. My then-fiancé, Chris, still lived in Illinois at the time. I told him what was going on and he told me, “You are not having a heart attack, stop worrying.” I thought, “I’ll call the ask-a-nurse hotline!” And that is what I did. The nurse urged me to go to the ER, stating that in women, gall bladder issues can present with shoulder pain. I just couldn’t shake the feeling something was wrong. The only reason I went to the ER was because my dad had a massive heart attack at 35 years old, and I thought, “Well, I have the family history….so I’ll go.”

I went to the ER at Waukesha Memorial. I drove myself. I remember telling the triage nurse, “Look, I don’t really need to be here, but they wanted me to come in.” I took my laptop to play games, if I got bored. Little did I know…. within 15 minutes of the doctor first seeing me, I was having a CAT scan. It was incredibly hard and incredibly painful. I had to raise my arms over my head, which I could hardly do. The voice of the scanner said, “Take a deep breath. Hold your breath.” I couldn’t. I had no lung capacity. After several tries, we got enough of an image for them to send it to be read. They took me back to my room.

I don’t know how long it was before the doctor came back. All I remember is how uncomfortable I was. I remember rocking back and forth, just trying to find a position that made breathing easier. It was futile.

The ER doc came back in and told me that they were going to admit me. They still tried to sugar coat things a bit, probably especially since I was alone. He told me I had “some clots in both lungs.” As he left the room to talk to the PA about admitting me, I overheard him say, “I don’t know if she’ll make it through the night.”

WHAT?!?!?!?! Imagine my shock, my horror, my terror! Many medical personnel started coming in. They put me on a heart monitor, oxygen and a pulse ox monitor. I was terrified. I was alone, and it was now the middle of the night.

Then, it got bad. I remember being uncomfortable. I went from discomfort to mind-altering pain that felt like I was dying in an instant. It hit so fast, it took all of my breath away. I remember hitting the call button as fast as I could, and time seemed to come to a halt. I remember turning around to watch my heartbeat on the monitor and thinking, “This is it, I’m going to watch myself flat line.” I prayed for my babies to remember me.

They rushed in and gave me a shot of Dilaudid (holy crap) to help with the pain. It took maybe just the edge off, but made me high out of my mind. The next few hours were a narcotic-induced blur.

I was in the CICU for five days. The morning after being admitted, I called a good friend of mine who is a doctor, because I knew she’d be honest with me. I asked her point blank, “Renee, am I going to die?” She paused for a long time and finally said, “I don’t know.” That terrified me. I knew she was being honest and she didn’t know if I would live or die.

I got Heparin blood thinners in the ER, and I left the hospital with a combination of Lovenox and Coumadin. Lovenox is a shot I would take every 12 hours in the stomach. I had to do that for four weeks. I was on Coumadin for 18 months. I had my blood tested (INR) twice a week during that entire time. I had constant huge bruises. I lost hair and memory, a little known side effect of Coumadin for some people. If I cut myself, I would bleed uncontrollably. My gums would bleed when I brushed my teeth. It was 18 months of praying I wouldn’t hit my head in an accident because I’d bleed out before help could arrive. It was 18 months of my then 12-year-old daughter getting in my face if I was napping, because she was checking to make sure I was still alive. It was18 months of waking up to any twinge of pain and being afraid it was another clot. It was 18 months of hell.

I have no family history of blood clots. I didn’t a recent surgery. The only two risk categories I fell into were being on a birth control pill and being on a road trip. What caused them, we don’t really know, but it could happen to you, too. My husband’s grandpa died in his sleep of a PE. My sister-in-law’s mom died of a PE. My other sister-in-law’s close friend died of a PE.

I encourage everyone to know what to watch for and know to get help. We are always told that the ER is for emergencies. I never in a million years thought I was having an emergency. As a woman, and like so many other women, I am polite and put others before myself. I’m here to tell you, if you have a pain that you don’t know about, go to the ER. Just do it. It is better to find out it is nothing than to be dead. A week after leaving the hospital, my doctor told me if I had gone to sleep that night, I would not have woken up in the morning. Don’t be in that position. Education is key. Stay healthy and stay alive.


Share Your Story SQEditor’s Note: Thank you, Denise, for sharing your story with BCRN. Connect with Denise in the comments below.


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