Patient Story: Taking Charge of Your Life with a PE by Megan Weisgerber

Blog Photo Weisgerber, MeganOn a cold February afternoon, the pain in my legs and ankles was unbearable. After standing on my feet all day at work, I thought the pain was just from that, but it did not go away. I went to the local Urgent Care, they ran an EKG and since I had started birth control, the doctor advised me to go to the ER. I remember feeling frightened and thinking “What is wrong with me? What if I need surgery?” My parents were on vacation and I drove myself to the Urgent Care, so I called my boyfriend who immediately came and got me took me to the ER.

When I got to the ER, I felt as if my heart was about to come out of my chest. I was freaking out. I am only 18 and I had never been in the hospital. The doctor in the ER explained to me that a side affect from the birth control was a pulmonary embolism. I didn’t even know what that was. That night, I went for an x-ray which came back fine, but the doctor informed me to take a nap and in three hours, I would be sent for a scan of my lungs. He made it sound like I would be fine because the x-ray was okay. He said the scan should be negative and I would be going home afterwards. Shortly after they took me in for the scan, I was approached by a new doctor because my original doctor had gone home. The new doctor informed me that I had a pulmonary embolism (PE). I can remember exactly how I felt at that moment. My heart sank and I began to cry. I felt as if my entire world collapsed. My parents were almost three hours away. Thank God I had my boyfriend with me who consoled me.

I thought I would need surgery which was something I have never had. I have the biggest fear of being given anesthesia or having to breathe with the help of a machine. As I was crying, the doctor told me I would be placed in the hospital for a couple of days, which made me freak out even more. I am a college student and missing a couple of days is a lot of work to make up. I remember thinking, “How am I going to survive this? I can’t do this.” The doctor informed me I would be placed on injection blood thinners for at least three months. All I could think about was, “Am I going to survive this?!”

Weisgerber, Megan_QuoteI was transferred to the Children’s Hospital and was hospitalized for three days. The doctors and nurses at the Children’s Hospital made me feel at ease. They gave me the comfort I needed and they helped me believe in myself that I can fight this. I do not like letting my family when I am scared or worried. All I wanted to do was cry myself to sleep and wake up and have all of this be over. The first night when my family left and I was all alone, I just began to cry and cry. This was the first time that I was alone since I was diagnosed. I had the time to just reflect on everything. I told myself that I had to be strong for my family and that I would make it through this.

I went from living a carefree life, always being out late and enjoying life to having my world flipped upside down. Now, I am tired and worn out easier, I have to take injections twice a day and even on my days off, I have to wake up at 6:30 a.m. to take my shot. I feel as though I had to grow up and really get my stuff together.

There are times when it is hard and my friends want to hangout and I would love to, but I am just so worn out I can’t. I feel bad because they do not fully comprehend how serious and painful this has been. I learned a lot about myself, family, and friends. It is true that you learn who your real friends are when you are sick. People who I never would have expected reached out to me, and people who I thought would be by my side, did not even send a text. It’s okay, though, because I promised myself from now on I would only focus on positive vibes and people who care.

There is no way I could have made it through the past month without my parents, sister, grandparents, aunts, uncles, cousins, my boyfriend, Kris, and my best friends, CJ and Nick. They are the perfect example of a great support system. They were all by my side in the hospital when I needed them the most. I practically spent everyday with Kris and CJ before the clot. We would always be out late and enjoying ourselves, but now I cannot do that anymore. Yet, they still stay by my side even if it is just laying low and doing nothing. They understand and accept it.

I feel as if I am going to be okay now. Yes, I am worried that I will have to be on my medication for six months instead of three, but I know that God doesn’t give us anything we can’t handle. I have my special angel in the sky watching over me, and I know I will make it through this. I would love to become an advocate for pulmonary embolisms. People are not aware of how serious and dangerous this can be. I was living with one and my only symptom was my feet being swollen, which was something I would have never thought would lead to being on medication, injecting myself with shots for three months.


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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: It took almost 13 months to feel fine by Caitlynn

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A Survivor Speaks: It took almost 13 months to feel fine by Caitlynn Stamey

If I am being honest, fine is the only word I can use to describe how I feel. A year and two months ago, I was hospitalized for bilateral pulmonary emboli. I’m talking about 13 blood clots in my upper chest. If I had gone to the hospital any later than I did, the doctors said I would have had a heart attack, or even better, a stroke. Can you imagine that? A 20 year-old suffering from a stroke? A stroke that would have been self-inflicted. You see, I didn’t happen upon blood clots, I was my own enemy in this story. Or at least, birth control was, and I was the one who doubled & tripled up on doses when I missed a few days. All of my friends did it, so why was I any different? Because, little to my knowing, I have Factor V Leiden. This is a blood clotting disorder that is triggered to kill you via estrogen. Go figure.

My story is just like everyone else’s, I had the worst pain you could ever imagine and I ignored it for three days. I waited until the pain was so unbearable that I went to an ER. It took four doctors, three x-rays, eight hours, two CT’s, several blood tests, and at least two urine tests to determine what was going on. I like to think the doctors didn’t want to believe they were about to tell a lively, life-loving 20 year old that life as she knew it was over. You are not invincible, no alcohol if at all possible, long plane rides could be your demise, and having babies is pretty much out the window seeing as you also have PCOS.

Staring my mortality in the face was probably the hardest part of this whole thing. You see, all my friends still think that they are infinite. I do not. When I brought up my PE’s most of my friends laughed it off like it was nothing. I guess I don’t blame them. Who wants to think about the possibility of dying at 20 years young? Nobody does. But the elephant in the room that everyone ignored was what I was, and still am living with. To this day I stay up all night thinking about everything that happened last year. I feel better physically, but mentally and emotionally I am drained. I find myself looking up blogs on PE’s or reading about them (like I don’t already know everything there is to know about them having survived one).

Don’t get me wrong, I am SO THANKFUL to be alive. I guess that I never understood how someone could question their existence when they’ve lived through something that should have killed them. I understand now. I am slowly recovering; I do things that the doctors told me I might not be able to. I try to live my life to the fullest because I know how quickly it can slip away. I chase my dreams like no tomorrow and I try to be the same happy go lucky girl I was pre-PE.

I think that post PE Caitlynn is pretty bad-ass, though.

Connect with Caitlynn in the comments below!

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