Survivor Spotlight: Alissa Anne

I was 16 years old when my world was turned upside down.

I started experiencing excruciating headaches to the point where I had my mom take me to the ER (I am someone who toughs through any pain, so I knew something was wrong when I had to go the hospital).

After 18 hours of tests I got sent home with a clean bill of health.

Later that week I began experiencing terrible chest pains, which were so bad that I had to sit down in the hallways at school after walking only a few steps. I went to my pediatrician and was diagnosed with pneumonia and was sent home on some medication. A few days later, I woke up in the middle of the night in extraordinary pain and coughing up blood and ended back up in the ER. After a CT scan I was diagnosed with severe bilateral pulmonary embolisms; so bad that they warned my parents that I may not make it. After more imaging, multiple DVTs were found in my brain, internal jugular vein, arm, and leg. Genetic testing revealed that I was positive for Factor V Leiden, Prothrombin Gene Mutation, MTHFR, and lupus anticoagulant. I also have May Thurners Syndrome. I spent a week in a hospital and then was transferred to a Children’s Hospital for another 3 weeks. After leaving the hospital nothing was the same. I have been an athlete my entire life, and I could barely walk without getting short of breath. I had to watch what I ate because I was on Coumadin. I couldn’t go do “normal” things teenagers did because of the risk of bleeding. I no longer lived a carefree life that I saw everyone else around me living; however, slowly but surely I started to gain some normalcy to my life. While things improved, I continued to have severe chest pain from the clots in my lung and all the damage they had caused. Consultation after consultation, it became decided that having 2/3 of my left lung removed was the best course of action. The summer before my senior year in high school I underwent an excruciatingly painful surgery. Besides my lung collapsing a few times in the hospital, the surgery went well and I recovered quite quickly; 5 weeks after my surgery I was playing volleyball again. While everything that I went through at a young age did take a toll of my life in negative ways, I believe that it gave me back more than what it took from me. It allowed my family to be tested for genetic conditions so now they are aware or risks and symptoms of what comes along with blood clotting disorders. I have a much greater appreciation for life and all that it encompasses. Now I will be starting medical school in a month with the plan to pursue pediatric hematology, so I can hopefully make an impact on a child the way my hematologist saved my life. I am grateful to be healthy today and able to chase my dreams passionately, with not much holding me back anymore. I know that I am still at great risk for future episodes, but I live each day to the fullest and try to not let my condition hold me down.

Survivor Spotlight: Sarah Louise Carter

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My story

I was diagnosed with a PE at 28 weeks pregnant. However, I had been fighting for months prior to being pregnant about symptoms I had.  It just seemed that pregnancy made my symptoms worse.

One night, I was admitted into A&E with a heart rate of 230bpm and severe chest pain. I was sent home with the doctor telling me it was simply anxiety. Luckily my mum took me back the next day and demanded I got taken seriously. I was extremly poorly when I was pregnant and I’m so glad she took me back because I wouldn’t have gone myself.
They finally gave me a VQ scan and they found 2 clots in my left lung. They said one was the size of a mans fist. It was so terrifying but at the same time I didn’t fully understand because it wasn’t explained to me properly! I got put on clexane injections until I was 8 weeks post partum then put on Warfrin tablets.

I’ve been medication, and clot free for almost a year now in June 2017.

I’m also very thankful I found this Survivor page. It made me feel as though I wasn’t the only person! I wasn’t alone♡

Survivor Spotlight: Jamie Kreger

My story begins with a knee injury.  On October 2015, I went to Urgent Care. I was told I probably had a torn ACL and meniscus or something very similar. The doctor said I needed an immobilizer brace to walk until I could get into an orthopedic surgeon. I got the knee brace and could hobble around quite well with it. After three weeks in the knee brace, I was finally able to see a surgeon. The surgeon took me out of work so the swelling would go down and scheduled surgery for the following Tuesday. Neither, the urgent care or the surgeon thought to tell me to stop my birth control prescription. So, on November 6, 2015, I got out of bed to get ready for a follow up with the surgeon. (More or less it was a pre-op appointment for surgery on Tuesday.) I collapsed in the bathroom. Woke up 20 minutes later to my dog licking my face. Struggled to get out of the floor but every time I would try to stand, I’d collapse again. Finally, I crawled back to the bed. I then called my husband, who was at work, told him I had fallen and I needed him to come take me to the doctor. By this time, an hour and half already passed by. I had no idea how sick I was. He rushed home (45 minute drive…). Together, we wasted another 2 hours with him trying to get me to stand up without collapsing. We both thought it was my blood sugar or blood pressure. (My dad is diabetic. I have high blood pressure.) Finally, he becomes tired of me telling him not to call 911, that if he would only give me five more minutes, I can stand and walk to the car. Paramedics arrive, do the typical stuff.  They ask him some questions like, if we fight a lot… They ask me questions like, if he hit me….. The usual what are we dealing with here stuff…. Then, all of a sudden, a paramedic in training asked what prescriptions I was taking. My husband gathered them and began naming them to her. The first one he read off was birth control pills. All of a sudden, I was in the ambulance. They were talking of blood clots. No typical signs of DVT in my leg though. The medics were in communication with the ER physician. I then arrived. He wasted no time and within 30 minutes, I had CT scan, diagnosed with massive bi-lateral saddle pulmonary emboli. We had waited long enough (20 minutes) to have an echocardiogram, then on to surgery I went. I had caths ran to both lungs. I spent the night in ICU. I then had heart failure.  I had a massive DVT from just above knee to arch of foot. Had 10 bags of IV’s hanging in ICU. I had one night in ICU, plus three more nights in hospital and then I went home Thursday, November 10th.

I am now on Xarelto until November 30, 2016. (Lovenox before knee surgery.)  They waited for blood clots in leg to dissolve, had successful ACL reconstruction on April 19, 2016. Had IVC placed November 7, 2015, then removed May 17, 2016. During the time between blood clots and knee surgery, I had to wear a brace to walk (ACL stabilizer).

 The good part of this, the knee surgeon group has completely changed how they deal with the risk of blood clots. To this day, I elevate and ice. I ice to keep inflammation down at knee which helps with circulation. I’m very active again. I was training for a half marathon at the time of my injury. I had been told recovery would take 2-3yrs. They told me don’t count on walking a half marathon or hiking for at least 2 years. I walked my first post- blood clot/ACL surgery half marathon on November 12, 2016. (Took me only six minutes longer than my best ½ marathon time…..) One year and six days after my clots, less than seven months post ACL reconstruction.

 I’m very lucky. All my surgeons worked together to help me achieve my goal of walking that half marathon a year post blood clot. My knee surgeon created a training schedule for me – for my “fresh” ACL. I walk daily. I find it helps with my left leg. I do have permanent valve damage in my left leg. I wear compression stockings and elevate.

Live each day. Don’t wait for retirement or when you have time to do things that make you happy. Take each day as the precious gift it is. So, there is hope. Just take it a day at a time. Listen to your body. I have good days and bad days. Some days I walk slower than others. Also, I’m back to hiking now.

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