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.


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Surviving Myself by Don

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Hello, my name is Don.  I am writing you to share my story and to express my sincere appreciation for your efforts with public awareness of clotting disorders.  I am a Paramedic employed with a Non-Profit medevac helicopter organization. We transport high acuity patients on a regular basis.  These patients range on a very broad spectrum, from multi-system trauma to acute medical emergencies including stroke, heart attack, and pulmonary embolism.  Education and clinical experience has informed me of specific manifestations to assess for, when differentiating acute pulmonary embolism (APE) as the causative culprit.  A classic text book description of pulmonary embolism is “atypical” chest pain, among many other descriptors.  Atypical meaning APE manifests in  a way inconsistent from other chest pain causing conditions, hindering diagnosis and impacting prognosis.  In my career I have cared for and treated many patients impacted by acute pulmonary embolism.

Prior to my grandmother’s passing, some early childhood memories of mine are visiting her during her many hospitalizations for deep vein thrombosis.  Her unfortunate “condition” was passed along to her children, specifically my mother and aunts. All have been plagued with numerous DVT hospitalizations, varicose veins, coumadin life changes, and lovenox shots.  Factor V Leiden has been confirmed as the genetic clotting disorder that has been passed down from generation to generation.

I am a relatively healthy 35 year old male that lives an active life with a beautiful wife and two young amazing children.  I’ve committed my career to helping others in their most worst times of need.  I volunteer a large portion of my free time to our local volunteer fire department and ambulance, serving as the Fire Chief and also a volunteer paramedic.

don and wife

Just about a week ago, I developed pain and discomfort in my right bicep.  The medical side of me dismissed the very “different” pain and discomfort to that of a typical pulled muscle, and life went on.  A few days ago, while tapping maple trees with my brother-in-law, one of our snowmobiles became stuck resulting in strenuous lifting.  The following day I began experiencing “atypical” chest pain.  Yet again, the medical side of me dismissed the chest discomfort and pleuritic pain as that of just another pulled muscle.  After all, what else could it be?  Following a few sleepless nights racked with severe stabbing pain radiating to my right shoulder, I relented and sought evaluation at my local emergency room.

Personally knowing the majority of the staff on hand, including the physicians and mid-level practitioners, still didn’t preclude my assessment to that of a strained muscle, despite my colleagues thinking differently.  During evaluation and initial work up, labs were drawn, and my D- Dimer was found to be elevated.  During my contrast CT scan, I was still convinced that I was experiencing a strained muscle, that is until the results came back.  Multiple acute pulmonary embolism with pleural effusion.  Ultrasound confirmed a large DVT in my right bicep.  Not until that point did my years of training, assessments, and experience finally clear up my personal tunnel vision.  It was all too clear.  Family history of Factor V Leiden, family history of DVT, pain in right bicep, strenuous physical activity and exertion, atypical chest pain and shortness of breath EQUALS pulmonary embolism.

How did I miss this?  The answer is evident among the medical community as a whole.  One out of every three pulmonary embolism patients presenting to the ER are misdiagnosed, according to a recent retrospective observational  study.  Education and awareness to the community, healthcare workers, and first responders is paramount.  This disease is quickly overlooked, and can be so very debilitating or even fatal.  So again, I express my appreciation for your commitment to public awareness and education, which unquestionably will save many lives.  God willing, I will continue my passion and save many more future lives.  If I could ever be of any assistance, please don’t hesitate to ask.

Thank you, Don, for sharing your story with the BCRN community. Be sure to connect with Don in the comments below!

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A Survivor Speaks: The Trip of a Lifetime by Lori

In 2010, I experienced pain in my calf, which I thought was a charley horse and ignored for several weeks. When my leg and foot began to swell, my husband insisted I get checked out. I went to a walk-in clinic and was immediately sent to the ER. I was diagnosed with a DVT in my lower left leg. I was shocked! The doctor said it was caused by birth control pills, which I had only been taking for about six months for the hormonal benefits. I spent five days in the hospital, followed by two months of bed rest. After six months, my doctor took me off Coumadin, despite being diagnosed with Factor V Leiden.

Fast forward to February 2014. My husband and I were going to New York City for a romantic Valentine’s Day weekend. The week of our trip, I wasn’t feeling good. I had been working out very hard with a trainer and also tried a new exercise class. My thighs hurt, but I thought I just over-exerted during my workouts and pulled a quad muscle. I got light-headed one time when I got up from my desk at work, but I paid no attention, thinking I just got up too fast.

On Valentine’s Day, my husband picked me up at work to go to the airport for our flight to New York. We parked and started walking to the terminal. Suddenly, I had to stop and rest every few feet. I wasn’t having any pain or shortness of breath, but for some reason, I just couldn’t move for more than a few steps. After what seemed like an eternity, I made it into the terminal. When I did, I had to sit down immediately, as I suddenly could no longer breathe. Someone nearby noticed my distress and called an ambulance. My blood pressure dropped to 75, my heart rate was over 170. I went into tachycardia and was rushed to the nearest hospital.

I had two PE’s in my right lung, four DVTs in my left leg, and my right leg was completely blocked from my knee to my groin. Instead of going to New York City for the weekend, I was now fighting for my life. Due to the amount and severity of the clots, I was transferred to the ICU. After a few days with no improvement, I underwent a procedure where catheters were inserted behind both knees and a clot busting medicine was dripped through my veins.  It didn’t work. My feet turned blue, the nurses had trouble finding a pulse and I was scared. The doctors then went in again and basically “scrubbed” the clots from my veins. I spent the next five days in ICU, urinating blood and unable to move. I finally began to improve and was moved to a regular room, where I stayed for another week while they tried to get my INR to a therapeutic level.

It’s now five months later and I feel pretty good, other than some chest pain and extreme fatigue from anemia. I think about how lucky I am and that I got to the hospital in time. At times it’s overwhelming to think how close I came to dying. I also wonder though, why I survived and others don’t.  It’s hard to not overreact to every ache and pain, but also remember how important it is to get things checked out. It’s a delicate balance. I’m happy to say we finally made it to New York City over the 4th of July weekend this summer! I was anxious about flying, considering my close call but I made it! I don’t like the fact I’ll be on Coumadin for life, but each time I take it, I remind myself that I have been given another day to live and that I’m a survivor!

Thank you, Lori, for sharing your story with BCRN!

 

A Survivor Speaks: My Factor V Leiden Miracles by Cathy Westveer

Hi my name is Cathy Westveer. This is my story about how I found out how I have Factor V Leiden heterozygous mutation. Back in 2002, my daughter, Britaney was about four months old; I was on the pill, and smoking. I started having left calf pain. I went to the doctor and the doctor ordered an ultrasound. Everything came back fine. A week went by the pain and swelling got progressively worst. My left leg was at least two times the size of my right leg; I was starting to have a hard time bearing weight on it. At that point, my husband, Ken took me to the hospital; they did not order an ultrasound because the one I had a week before that was negative. They diagnosed me with a strain/sprain and put an ace bandage on my left leg, and send me on my way.

By the end of week two I could not bear any weight at all on my left leg.  Ken was pushing me around in a wheel chair. Beyond frustrated, and in immense pain, it felt like someone was constantly jamming a knife in my  left  leg and hitting  my bone with it, that is the only way I can describe the pain. When I hit week three Ken was getting frustrated and really worried, he took me back to the doctor, I put up a fight, because I was worried my doctor would think I was a hypochondriac  at this point. My left leg was at least five times its original size and many different colors. I was in so much pain and having a really hard time nursing Britaney.

In our PCP’s office I was sitting in the wheel chair holding Britaney in my lap, my doctor looked at my left leg and said I might I have compartment syndrome. He told me for the length of time I had the symptoms and how bad my leg looked if that’s what it was, I may never be able to walk again. I sat there balling my eyes out, holding my daughter thinking to myself, I am only 26, and how could it be that I may never walk again?  He immediately sent me to a Vascular Surgeon, Dr. R., he said the same exact thing my doctor said, however he ordered another ultrasound, his ultrasound tech did an ultrasound. And to my surprise, shock and horror, I had multiple DVTS the entire length of my left leg!!! Dr. R. asked me if I had chest pain, or a hard time breathing? I said no. He wanted to admit me; I said only if I can have Britaney with me. He said no!  Ken and him talked a little bit, and agreed to let me go home, 72 hours bed rest, can only get up to go the bathroom. He put me on Lovenox and Coumadin. And for three weeks, he was having a lab tech came to my house every other day to draw blood to check my PT/INR. He also told me that I still had a chance of not being able to walk again, and the damage to my veins was permanent.

My PCP ordered a bunch of blood work!  And they discovered that I have Factor V Leiden Heterozygous mutation. My PCP sent me to a Hematologist, Dr. K. During my follow up with Dr. K,  he suggested me to not have any more children, but if I did I needed to talk to see him first, to talk preventative measures. About two years later we decided to have another baby. I went on Lovenox every 12 hours. We got pregnant. I had some bleeding and panic. I have had three miscarriages before my daughter, one of them I am pretty sure was a result of Factor V Leiden, because the baby had a heartbeat until 12 weeks, but that was before I knew I had Factor V Leiden Heterozygous mutation. Come to find out I had placenta Previa; I had to go on bed rest for a month. But other than that the pregnancy ran smoothly, other than the fact that my abdomen looked like a road map from the Lovenox shots, so many nasty bruises, definitely not a glamorous pregnancy.

Three days after Kenny was born, even though I was on Lovenox, Heparin, and Coumadin, I had left calf pain. Low and behold I had a surface clot. At this point my hematologist said, no babies, too much of a risk! He also told me I will never be able to go off of Coumadin. I had a hard time for years with this!  But I am now okay with it. I have two beautiful children!! Two Factor V Leiden Heterozygous mutation miracles.

In 2013 I was really having a hard time with keeping my PT/INR’S where they were supposed to be. They were all over the place. It was getting to the point that the phlebotomist who was drawing my blood weekly told me she was going to call my doctor and suggest her to have something put into my veins, because they were not letting the blood out anymore. And thanks to the Factor V Leiden groups I found on Facebook, including Forever Deborah, I heard about the self- tester for PT/INR. I brought that to my doctor’s attention. My doctor refused it to let me have it. After a good argument she broke down and told me she was going to call one of her fellow Hematologists to see what he advises!  Little did she know she called my Hematologist, and he was okay with the self-tester but he had something far better for me.

A new blood thinner, Xarelto, that was just recently approved for Factor V Leiden Patients, the only down fall with this new drug they still have not come up with an anecdote for reversing hemorrhaging, but there are not diet restrictions, and no blood work! I have been on it since March/April 2013, so far so good!  And finally living somewhat of a normal life with Factor V Leiden Heterozygous mutation!

Connect with Cathy in the comments below!

 

A Survivor Speaks: Fighting Factor Five By Jennifer Murnin

Jennifer M Cover (MAY)

In 2008, at the age of 18, I got my first blood clot.  During a weekend away, I began having pain in my right hip which lasted the entire weekend and gradually became stronger.  I tried to ignore the pain until I woke up Monday morning with swelling in my entire leg.  I had no idea where the pain was coming from so I called off work and made my mom take me to the emergency room.  While waiting to see a doctor, my entire leg and foot began to turn purple and swell even more.  Nurses did X-rays on my hips and found nothing wrong.  Eventually, a doctor came to see me and told me I had Bursitis (swelling in my joints).  My mom got me an anti-inflammatory and we went home feeling satisfied that we found out what was wrong.

Later that night my uncle called to talk to my dad about the plumbing in his house.  Fortunately, my family doctor is also my uncle, and because I was not feeling any better, my mom asked my dad to tell my uncle what had happened that day at the hospital.  Without hesitation, my uncle asked my dad to squeeze my calf and bend my toes.  He couldn’t.  The swelling was too severe.  After hearing that and without even seeing my leg, my uncle told my dad that I had a blood clot and needed to get back to the hospital immediately.   Feeling nervous, I asked both of my parents what a blood clot was and they responded, “not good”.  My dad told me to pack an overnight bag which confused me even more and brought on feelings of fear and helplessness.  I did not know how much more severe all of this was going to become.

As soon as I got to the emergency room, I was taken right back to a room where an ultrasound technician was waiting for me.  She asked me if I was taking birth control and I told her I was.  She immediately asked, “Do you take YAZ?”  Again, I responded, “yes” and she told me that day would be the last day I would take it.

As she began to do the ultrasound, she told me it wasn’t a question of if I had a blood clot, but how big it was.  At10:15pm, I was told my blood clot started in my toes and extended all the way to my hip.

I was admitted to the hospital and stayed the night with my mom by my side.  The next morning, around 8:30am, my blood clot was re-evaluated.  It was determined that the clot continued to get larger, and now extended to my belly button.  The doctors’ main concern was because the vein the blood clot was in is a vein that travels to my heart. Because of this concern, an implanted filter could be used to ensure the blood clot did not break off and travel; but it would not get rid of the clot so the filter would not benefit me.

By the afternoon, my uncle decided he would try a treatment that would hopefully dissolve the blood clot; a treatment that he had never tried before.

I think it was at this point when I began to panic because the reality sank in.  I suddenly became aware of how severe and scary this all was becoming.

The next morning I went in for a short procedure to insert three tubes in the back of my leg.  These tubes would pump a heavy-duty anticoagulant through my clotted veins.  Because of the strength of the anticoagulant and the potential life-threatening complications, I began my stay in the ICU.  The doctors told me the tubes could be in my leg anywhere from a couple of hours to a day at most.  While the tubes were placed, I could not sit up.  I could not bend my leg.  I could not really move at all for fear of moving the tubes and causing more pain and damage. Each morning I was taken back down to a short procedure room and had dye shot through my veins to determine if the treatment was working.  One day turned into two, two into three, and finally after five long, fear-filled days, the clot began to partially dissolve.  The remaining settled in between my calf and my toes.  I spent another two days as an admitted patient, scared that the blood clot would get larger and eventually travel to my heart.  As a young college student, eighteen years old, I never imagined I would be scared of dying.

After two more days, I was released with a diagnosis of Factor V Genetic Mutation or Factor V Leiden with DVT (Deep Vein Thrombosis). I went home on the condition that a home health nurse would come to my house every day to draw blood and administer Lovanox (blood thinner) shots in my stomach.  I had to wear a compression stocking that is tight on my leg to help improve the circulation of blood.

Finally after eight terrifying days, I was able to leave and return home.

As I made my way out of the hospital, I realized that I had to relearn how to bend my leg and even walk again.  After eight days, I left a new person – feeling damaged, hurt, angry, and broken.

After weeks filled with many specialist and doctor appointments, I was faced with the reality that my entire life was different.  I was put on a lifelong treatment of Coumadin (an oral blood thinner).  This changed the amount of vitamin k I could intake, the types of medicine I would be able to have, and began to thin my blood so much that a mere paper cut would bleed for five minutes and a small bruise would last for weeks.

I began my sophomore semester of college in the fall, and had to watch how long I was sitting in class.  I had to walk around campus with a bright white compression stocking on.  At the time, I hated that I had to wear it because everyone would stare.  I became angry that my entire life had to change because of a blood clot.  I spent a year or two battling with feelings of self-doubt, pity, disappointment, and resentment. I was dealing with so much while other college students were busy deciding what they were going to do with their Friday night.

It took a lot of time, support, and healing to come to terms with my new life.  I got there eventually.

Fast forward six years and I have now recently made a huge decision that will affect me and my future children and family.

From the day I was diagnosed with Factor V, many doctors and specialists assured me that my children were guaranteed to have the same genetic mutation.  I could not imagine wanting that life for my child or any child.  I did not want my children to wear a stocking.  I did not want them to be forced to get blood drawn every 3 – 4 weeks.  I did not want them to have to be scared of throwing a blood clot every day of their lives.

Because of the many risks associated with pregnancy and childbirth (for me as well as my children) I wanted to avoid the chance of pregnancy and any of the risks associated with it.  After years of contemplating and dealing with the conflicting positive and negative feelings towards the situation, I met an amazing doctor who helped me feel confident and brave enough to make the right decision for me.  I decided to get my tubes tied.  I scheduled appointments with genetic counselors and specialists who provided me with every piece of information they could to help ensure I was making the right decision.  In the end, the support of my family and friends helped me make the best decision I could for myself and my future children.  I followed through on the surgery just three days ago.

I had the tubal on March 21, 2014 and unfortunately threw another small clot in my calf.  When I found the blood clot, I instantly filled up with feelings of fear and hurt.  I was angry that this decision I painfully made was only going to cause more pain and suffering.  I will forever live with this diagnosis and I now had to suffer the consequences of my decision.

The first time I had a blood clot, I was unsure of what was going to happen. Now that I knew what could happen, I was terrified.  Once again, my life could be changed, or even cut short before I had the chance to experience a lot of things that life might have in store for me in the future.

Thankfully my uncle came to my rescue again and saw me as soon as he could.  He assured me that this time the clot was not as concerning.  Since we know how my body reacts, we can solve this problem.  I will now spend the next week receiving Lovanox shots in my stomach twice a day as well as taking Coumadin to help thin my blood and dissolve the clot.

There are many times I return to the “life isn’t fair” feeling, but at the end of the day I am thankful for the amount of support I receive from my family and friends.  I can ignore the stocking I wear every day.  I can deal with the pills I take every night.  I can cope with getting blood work done every couple weeks.  I can survive and thrive knowing that the consequences could be so much worse.  The blood clot and damaged veins are painful and ache each and every day – but at the end of the day I am here, wearing my stocking, and thankful for the life I was given.

Jennifer and her friend, Katie Martin, are doing everything they can to help raise awareness about blood clots and make a difference in the lives of others facing this often devastating diagnosis, including walking on the Stop the Clot team in NYC on June 7, 2014.

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Jennifer and Katie have a fundraising page to raise money for the National Blood Clot Alliance. Please check it out, share and donate if you are able: www.grouprev.com/factorvfighters. Good luck Jennifer and Katie, we will be cheering for you.

 

March: Blood Clot Awareness Month

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

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

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

Just the Stats

  • Blood clots (DVT and PE) affect am estimated 900,000 Americans each year (Source).
  • Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS,and motor vehicle accidents combined (Source).
  • Blood clots are a leading cause of preventable hospital deaths in the United States (Source).
  • Blood clots are the leading cause of maternal deaths in the United States (Source).
  • 1 in 3 people who are diagnosed with PE will die.
  • In 25 percent of people who experience a PE, the first symptom is sudden death.
  • One person every minute will be diagnosed with DVT in the U.S. One person every six minutes will die from a PE in the U.S. (Source)
  • 10 to 30 percent of people affected by DVT/PE will die within one month of diagnosis.

The Facts

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

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

Did you know?

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

You may want to know

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

DVT (and subsequently PE) risk factors include

  • Hospital stay
  • Major surgery such as abdominal or pelvic surgery
  • Knee or hip replacement
  • Major trauma such as an auto accident or fall
  • Nursing home living
  • Leg paralysis
  • Older than 65 years
  • Trips over four hours by plane, car, train or bus
  • Active cancer or chemotherapy treatment
  • Bone fracture or cast
  • Birth control pills, patch or ring
  • Hormone replacement therapy
  • Pregnancy or a recent birth
  • Prior blood clot or family history of blood clots
  • Heart failure
  • Bed rest over three days
  • Obesity
  • Genetic/hereditary or acquired blood clotting disorder

Symptoms of a DVT

  • Swelling in the affected leg, including swelling in your ankle and foot.
  • Pain in your leg; this can include pain in your ankle and foot. The pain often starts in your calf and can feel like cramping or a charley horse. It won’t go away with regular stretching, massaging or rest.
  • Warmth over the affected area.
  • Changes in your skin color, such as turning pale, red or blue or purple.
  • You need to know in about half of all cases, deep vein thrombosis occurs without any noticeable symptoms.

Symptoms of a PE

  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath, cough or even lie down
  • Feeling light headed or dizzy, or fainting
  • Rapid pulse
  • Sweating
  • Coughing up blood
  • A sense of anxiety, nervousness or impending doom

What to do if you think you have a DVT

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

What to do if you think you have a PE

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

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There is hope for healing and you are not alone,

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