Patient Story: Occlusion in the Pathways of Life by Jordan Stonehouse

Stonehouse, Jordan Circle PicIt was spring 2014 in the beautiful state of Michigan, and I was entering the final week of classes before I could apply to the program of my dreams. Following a painful colposcopy procedure that had me bedridden for a few days, I sat for hours and hours studying for final exams. On a Thursday night, I instantly developed a sharp shooting pain in my left clavicle area. I didn’t give the pain much thought, placed it where it didn’t hurt, and continued to study. Over the weekend, I mentioned the sharp pain to close relatives who suggested stress as the culprit. Being a young, active, and nonsmoking woman, I couldn’t come up with a different diagnosis. I woke up multiple times a night due to the excruciating pain, but I continued to press on and push through. I had work and school to study for.

It was Tuesday, April 22, five days after developing chest pain, when I finally knew something was wrong. I worked a ten hour shift in the Trauma/ER department at a local hospital and was unable to catch my breath after climbing a flight of stairs to my car. I drove home to grab study materials for a Microbiology final that was scheduled for that evening. Again, I couldn’t climb the stairs to my apartment. I became hysterical. Why couldn’t this pain just go away, so I could focus on my school? I proceeded to drive myself to class. I don’t remember much of the exam, only trying to catch my breath throughout and reassuring my classmates that I was fine. Once finished, I walked to my car, stopped for gas and finally drove myself to the same ER I left earlier that day. As I walked towards the entrance, I was unable to breath and started crying for the first time. I was done trying to be strong. I couldn’t make another step. A volunteer quickly followed with a wheelchair and I was ushered inside. A stat EKG showed nothing and a chest X-Ray came up clear. I began to panic. Then, my D-Dimer test came back with a result of 5999 mcg/L, with normal being less than 250 mcg/L. I became numb.

It took exactly two hours for the medical team to obtain a CT scan and locate two sub massive blood clots in my left lung. I also had another clot causing about 80% blockage in the pulmonary valve of my heart. Given the size of these particular clots, I suffered from pulmonary infarction (dead lung tissue) and enlargement of my heart’s right chambers. I was placed on heparin and administered an emergent dose of tPA, a clot busting agent that is used to treat stroke victims, and transferred to the cardiac ICU for three days. Those three days were filled with constant monitoring and echo tests to make sure the clots decreased in size. After a total of eight frightening days, I was finally pain free and able to breathe again.

It took an additional five days for my INR to show up in the normal range. Throughout my stay, birth control pills were the only culprit we could point our fingers at. I was placed on Coumadin and discharged from the hospital with an extensive list of providers to follow up with. I visited anti-coagulation management centers every other day, every other week, then every other month to monitor my blood. I had cardiology appointments every month to make sure my heart chambers were returning to their normal size. In the weeks following my discharge, I had a difficult time wrapping my head around what had happened. I simply chose not to think about it and stayed as busy as possible. When it all caught up to me, I became an emotional mess. I became unable to deal with life. I didn’t feel well and couldn’t explain why. No one had the answers for me and I didn’t know where to find help.

Quote_Jordan StonehouseFortunately, blood work post-Coumadin therapy only showed elevated homocysteine levels, which I treat with folic acid and aspirin daily. But, I still struggle with the daily question of why did this happen to me? I had a plan for my life and was confident that my invincible body could carry me through it all. Now, I face debilitating anxiety and stress every day. I live in fear that I will develop another clot. Optimally, I would just be a normal 25-year-old woman who could manage her hormones with a simple pill and continue life full of energy and optimism. Knowing this isn’t an option for me, I realize I must seek out alternative therapies.

I wish my doctors would have told me that recovery from pulmonary embolisms isn’t easy. I wish I was provided with more information on the emotional and physical toll that these clots take on your body. I wish I wasn’t left to search for all the answers on my own.

I am so thankful to have found a resource like the Blood Clot Recovery Network. I am excited to learn from other survivors and find some reassurance that what I’m thinking and feeling is normal. The support alone will mean the world.

It is a blessing to still be here on this Earth, and it will be something I never take for granted.


Share Your Story SQThank you, Jordan, for sharing your story with BCRN. Connect with Jordan in the comments below. 


Visit Emotional and Lifestyle Recovery to learn more about emotional recovery from blood clots.


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


 

Comments

  1. Thank you for sharing your story, terrifying as it was. I’m sure if you wouldn’t have made it if you weren’t so strong and young. I think I must of had my PE four days before going to my doctor (whom is a Cardiologist). I thought I was having major anxiety attacks but I didn’t want to go to ER just for that. I finally realized that I needed help after several days of feeling like someone was sitting on my chest, stabbing pains, dizziness and really high BP. Lucky me, as she suspected immediately a PE was culprit. She ordered an immediate CT of lungs and discovered a small PE in left lung and immediately administered fast acting Xeralto and sent me on my way…. that’s it! The rest I had to figure out. I felt bewildered, fatigued, dizzy, headache, weak, terrified! When I called her to ask questions, she flippantly told me that if I was concerned as to why this happened, I should see a Hematologist for full blood panel, including genetic blood disorders and Gynocologist for cancer testing. Certain cancers can cause blood clots, by the way…don’t ya know! What!? Well my blood work came back with positive for heterozygous Factor V Leiden Mutation, and low levels of Vitamin D. I’ll be 48 years old in a few months, and now I find out about this genetic blood disorder! I smoked and took the pill for 10 years, I had two normal pregnancies and c-sections, weight gain and high blood pressure, low vitamin D, did not exercise for the past 5 years, all very dangerous for FVL carriers. Had I only known, I would have changed everything, my whole lifestyle would have changed. My doctor says I’ve dodged a million bullets perhaps. So I’m on blood thinners for life now, which make me feel terrible but I’m getting used to feeling tired with scattered thoughts and paranoid of new clots all the time. Waiting for results from gyno.Oncologist. I think testing for FVL and any other blood disorders should be mandatory upon prescribing birth control (Estrogen). It is just too dangerous. The warning pamphlet, is not enough. Most women don’t know what a DVT is, I didn’t! And when I took the pill, the pamphlet warned against taking pill and smoking OVER the age of 35 is dangerous! Suggesting that taking the pill and smoking under the age of 35 is fine! I hope this literature in warning pamphlet has changed since the late 80’s and 90’s!! Since discovering my new diagnosis, I have changed everything! Several daily walks, only drink alcohol on occasion, healthier diet, no more occasional cigarettes, normal blood pressure, lost 20 lbs./ 20 to go! I hope some day I can get off Xeralto, which I hate! My Cardiologist says blood thinners for life and Hematologist says 6 months. ??? I should feel lucky but instead I feel angry.

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