Introducing Women & Blood Clots, a Life-Saving Initiative

While blood clots can impact anyone, ranging in age, activity levels, weight, overall health and even gender, women alone face a continuum of risk throughout their lifetimes that is unique to them. Birth control and family planning, pregnancy and childbirth, as well as the treatment of menopause symptoms all involve critical decisions that increase a woman’s risk for developing life-threatening blood clots. Already faced with intricate decisions involving self-protection, pregnancy, children, families, aging care and overall health, it is easy for a woman to feel overwhelmed in the face of these decisions. Nearly as varied as the people devastated by blood clots, is the available information aiding women to make healthy decisions for herself and her family.

Until now. Stop the Clot National Blood Clot Alliance, in partnership with the Alexandra L. Rowan Memorial Foundation, have launched a life-saving initiative specifically designed to educate women about the risks they face and ways to reduce those risks, Women & Blood Clots. Tragically, 23 year-old Alexandra lost her life due to a blood clot, with no warning. In order to preserve her memory and continue to raise awareness on a broad scale, this new resource focuses explicitly on the information women need to make informed decisions to protect themselves as well as understand the signs and symptoms of blood clots, including blood clots deep vein thrombosis (DVT) or blood clots in the arms or legs and pulmonary embolism (PE) or blood clots in the lungs.

Women are at an increased risk for blood clots during three key phases of their lives.

  1. While taking oral contraceptives (or birth control). Visit the site or watch this short video to learn more about pregnancy and family planning, including birth control methods and blood clot risks.
  2. During Pregnancy and Childbirth, including the initial weeks post-childbirth. Visit the site or watch this short video for information about risk during pregnancy, including anticoagulation therapy while pregnant, giving birth while taking blood thinners and risk management after giving birth.
  3. When receiving hormone replacement therapy (HRT) for the treatment of menopause symptoms. Visit the site or watch this short video for more information about receiving hormonal treatment as an aging woman.

Women & Blood Clots is a uniquely feminine and bright site dedicated to educating a variety of women while remaining simple to read, easy to navigate and full of valuable, life-preserving information.

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As a blood clot awareness advocate, Women & Blood Clots is very important to me because the issues pertaining to birth control, pregnancy, child birth and hormone replacement therapy and blood clots or recovery are the topics I discuss each and every day with so many of you. While understanding risk, evaluating treatment options, and recognizing the signs and symptoms of potentially deadly blood clots should always be discussed with your chosen medical professional, Women & Blood Clots comes as a much-needed resource in an area that was previously laking for concise, clear and easily accessible information. In my personal life, I still talk to females far too frequently who are taking birth control, pregnant or even a new mother and have no idea they are at risk for something that could claim their lives. This resource is critical, it is essential and it is life-saving.

According to the American Public Health Association, nearly three-quarters of people know little or nothing about DVT, or blood clots that form in the deep veins of the legs. Similar research conducted by the National Blood Clot Alliance shows that fewer than 10% of a national sample of people had any knowledge of DVT and PE. Furthermore, only 30% of people who recognized what a blood clot is were familiar with signs, symptoms, or risks factors. Those statistics are staggering considering that also according to the NBCA, as many 900,000 people in the United States are affected by blood clots. About 100,000 of these individuals will die due to a blood clot. That is about 274 people every single day. The number of deaths due to blood clots each year is greater than the annual number of deaths due to AIDs, breast cancer, and car accidents combined, yet, they remain virtually unheard of by a vast number of people (Stop the Clot).

Please, bookmark Women & Blood Clots, share it on social media or email it to the women in your own life. Even if you do not know how to approach what are often sensitive topics, read over the information or watch the videos and share a few facts with the women you cherish. Usually, the conversation evolves on its own simply by sharing your story. For example, I often share what happened to me and the ladies I have spoken to may say, “I’m so glad that won’t happen to me,” and I then follow up with, “If you’re taking birth control you are still at risk” or “If you’re planning to have children you’re at risk too.” Then I tell them what signs and symptoms to watch out for. Most women want to know more about initiatives they can take to care for themselves or their loved ones and walk away from the conversation feeling empowered about their own health. By equipping people with the knowledge to make informed decisions, we ultimately save lives and hopefully move toward a future where fewer lives are lost as a result of blood clots.

In an effort to foster even more conversation, awareness, education and empowerment, the National Blood Clot Alliance along with the Rowan Foundation, will soon launch an online support group and discussion community, powered by Inspire, to provide a safe and supportive place where, patients, loved ones, family members, friends and caregivers can converse, share and support one another when facing the life-altering effects of blood clots and blood clotting disorders. I will share this resource here once it becomes available and you can sign up for updates too. 

Reader Writes In: Have you been waiting for a resource like this? Who is one person or where is one place you plan to share this information? 

There is hope for healing and you are not alone,

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A Survivor Speaks: I Am A Mother by Lynda Jurva

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My name is Lynda. I am 35 years old and the mother of 4 beautiful amazing children. My story starts July 28th 2014, one of the happiest days of my life. My precious baby girl was born. As a mother of three boys, this was very exciting! She decided to come four weeks early while we were away vacationing at a cottage. Little did I know that her coming early probably saved both our lives. She is my angel. I felt great after my delivery everything was going smoothly. Two weeks later, I started to get pain in my leg and butt check, which felt like I had pulled a muscle. I joked with my husband saying how in the world did I manage to pull a muscle there?! As the days went on, it kept getting worse so I would ice it and would get a little relief. By Friday (after having this pain since Monday) the pain had moved to my left thigh and was so bad I could barley walk. I kept pushing myself thinking it was just labour and delivery related, and I even when to the mall with my sister that night! I kept telling myself to not be such a baby and just walk it off. When I got home and changed for bed, I noticed my left leg was purple. I called my husband to show him, he started to look things up on Google and we decided it was was just pregnancy related. I went to bed feeling really scared. I was crying and felt like I may die. I have never felt that way before.

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I moved my baby’s bassinet tight against my bed so I could still feed her through the night without getting out of bed. Every time I would wake, my left leg felt heavier and heavier. In the morning, I could barley get out of bed my leg was so heavy and painful. When I looked down at my leg it was not only purple, but at least twice the size! It was then that my husband and I decided it was time to go to the Emergency Room. I had a blood test done that showed I had a high chance of having a blood clot. I thought that can’t be, its probably just a pinched nerve or something. I was sent for an ultrasound and I will never forget what happened next. I was waiting for the results on a stretcher with my husband and three week old baby and the doctor came in looking very shocked. She said, “You have a very large blood clot.”

I instantly felt terrified and started crying. The doctor said, “You have a very rare severe type of blood clot called Phlegmasia cerulea dolens.” It was a solid blood clot from the back of my knee to the middle of my stomach, They said they needed to transfer me by ambulance to a hospital in Toronto, about one and half hours  away for a special procedure. I was later told by the ER doctor when she came to visit me in the hospital that when the vascular surgeon saw my ultrasound he said there was nothing he could for me and they needed to get me out of there right away.

It was lights and sirens all the way there. I was so scared. I am a mother, I have a newborn baby to take care of. I just couldn’t believe this was happening to me. I had a wonderful nurse that went for the ride with me that tried to keep my mind off of what was happening.

Once I got to the new hospital, I was told that there was also some clots in my lungs. My heart rate was 160. The surgical procedures I had was Balloon angioplasty of left femoral, external, common iliac veins, a catheter directed thrombolysis and IVC filter insertion. I spent the night in ICU. In the morning, I found out they had to stop the catheter medication as my body had a rare reaction to it and I almost started bleeding internally. I was told I had to start walking if I wanted to keep my leg! It was so painful I could only take two or three steps and then have to get back into bed.

I spent two more nights in that hospital and was then transferred to my local hospital to be closer to my family. I spent a total of two and a half weeks in the hospital trying to manage the pain, get rid of my fever, be able to walk again and have my filter removed. When I was released, I could only walk with a walker and had to use a tub bench to be able to take a shower. I couldn’t be left alone with my smaller kids as I couldn’t properly care for them.

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It has been almost three months now and I am proud to say I don’t use a walker anymore and all the swelling is gone. I have to wear thigh high compression stockings for the next two years and take Warfarin for six months.  I did find out that I have Factor Five Leiden. I do still get scared with any ache or pain, and I am waiting for the day when I’m not scared of my blood anymore. I am so happy and thankful to be alive! I survived what many don’t.

What I would like people to take from my story is that pregnancy can cause clots and to not ignore the signs your body is giving you.

Are you ready to blossom?

Thank you, Lynda, for sharing your story!

A Survivor Speaks: A Blood Clot and A Beautiful Baby Boy

March 7, 2013 initially started off like every other weekday morning. I was getting ready to go to work, but for some reason I was having a tough time walking. I had been really sore the last few weeks: back aches, side hurting, and uncomfortable sitting down. I thought it was because of being pregnant at my age of 37. So, I pushed through the pain and discomfort and went to work. As I sat at my desk trying to schedule something, I couldn’t get off the phone quick enough to stand up. I became so uncomfortable at that point that nothing was helping. I looked down at my legs while describing my pain to a coworker and realized my left leg was swollen twice the size of my right leg, was ice cold to the touch and was turning blue. I mentioned it to my coworkers and they sent me home.

Eventually, after running a few important errands, I went to my OB’s office to have them check me. As soon as I walked in the door, the head nurse sent me to the Emergency Room. She said if she didn’t know any better, she thought I had a blood clot and that I did not need to let it go unchecked any longer. I got into my car and called my mom on my way to the hospital to have her meet me there.

Once I got to the ER, they immediately took me back and started drawing blood. A vascular surgeon came in, and upon examining my leg, immediately ran out of the room and ordered an ultrasound of my leg. The ultrasound was very uncomfortable because of the tech having to push down on my leg, but it also became another scary situation: they couldn’t find a pulse in my foot or any blood flow to my foot.

The vascular surgeon came back into my room shortly after the ultrasound to let me know I was being admitted for a couple of days. He said I had a DVT, but that he was so happy that the coloring of my leg was improving some the longer it was elevated. He said if it had stayed blue they may have had to amputate my leg! At that point, I took a trip outside of my own thoughts, as I couldn’t bear to think of losing my leg and was really only concerned at that moment of what all of this meant for my unborn baby.

Come to find out, my DVT is from groin to knee and wraps around behind my knee. I’ve been on Lovenox injections since March 7, 2013. I was told on March 9th when I was released from the hospital that I should be able to go back to work and resume normal activities in a couple of days. I have not been able to return to work, as I’m not able to sit without being in a great deal of pain, so I ended up losing my job.

I still deal with pain daily and have trouble walking and functioning like I used to. I have had doctors give up on me by refusing to treat me anymore, thinking I can’t get any better. I’ve had doctors that have also told me I’m making up all the pain and trouble with moving, and that I should be a fully functioning person within a month of being diagnosed. I’ve also been told that DVTs do not cause pain.

Now, I’m in the process of working with a vascular surgeon that specializes in interventional radiology who believes I have May Thurner Syndrome as well as some other issues with the veins in my leg. It pays to keep pushing forward to find a doctor that really listens to YOU. I’m working daily towards getting better. The great part is that I have a healthy, happy, beautiful baby boy that will be turning 6 months old the day after my one year DVT anniversary.

*Editor’s Note:  Thank you, Debra, for sharing your story with BCRN! Connect with Debra in the comments below.

 

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!