My name is Alyson. I am 27 years old and I live in suburban, PA, just outside of Philadelphia. My blood clot story started in the summer of 2017 when I was 20 years old. I had just started on a low estrogen birth control pill (a generic version of YAZ) prior to leaving for Valencia, Spain to study abroad for two semesters. I made the decision to go on birth control due to painful and heavy periods. I felt fine in Spain during my first few weeks, however, I started to experience pain in my calf, similar to a Charley Horse. It only happened two to three times, but the pain was horrible. I did not think anything of it because I was walking more than usual around Valencia, not drinking a lot of water, and many of my friends were complaining of similar discomfort after long days of exploring.
Blood Clot Symptoms Continue
In October, I traveled to Morocco and while I was there, my friends and I decided to walk through the sand dunes. I found myself very short of breath and it was so noticeable that a few friends asked me if I was alright. I brushed it off as being out of shape and not being used to the heat. Around this time, I also started coughing. It started off as an annoying, dry cough, but slowly became deeper and more painful. I experienced the most pain and discomfort in my ribs during my coughing spells. We eventually learned from a chest X-ray that I had broken a rib from coughing so much.
Over time, I did notice that I would get short of breath walking to my school in Spain, which was about a mile away from my host family’s apartment, but again, I thought that I was just getting out of shape. Overall, I felt as though I had a continuous cold and I assumed that my constant travel was messing with my immune system. Eventually, I did go to a doctor in Spain, who gave me antibiotics . I experienced these coughing spells from October 2017 through April 2018 when I returned back home.
Upon returning home, I felt completely fine and my coughing had subsided. In June of 2018, I started to become lightheaded, extremely short of breath, and I began experiencing heart palpitations. Then, one day as I was walking from my university’s parking garage to my classroom, I was so lightheaded and out of breath that I had to stop and sit down at least four times to make it to my classroom. This was a walk that would typically take me five minutes to get from point A to point B. I started to think something might be wrong, but again, I brushed it off thinking that it would go away. A week later, my mom and I were on vacation in Mexico and my symptoms were at an all-time high. I was exhausted, just a walk down to the pool would make me feel as though I had just run a marathon. I never take naps, but I was taking at least one nap a day on vacation. I knew something was really wrong with me when the elevator in my hotel broke down and I was doubled over trying to catch my breath while going up three flights of stairs.
As soon as I returned home from Mexico, I made an appointment with my doctor. Right before I left for my appointment, my dad said, “Make sure they know that you are on birth control and to check for clots.” At my appointment, I had various tests, including a CT scan. As I walked back to my doctor’s office after getting the CT done, a nurse was waiting for me with the door open leading me to my doctor. In this moment, I thought, “Something is very, very wrong with me.” My doctor sat me down and said, “The CT scan came back. You have extensive blood clots in your lungs. You need to go the emergency room right now. They will be expecting you. Do you need an ambulance, or can your mom take you?”
Emergency Setting Treatment Decisions
My mom rushed me to the ER, where I was immediately surrounded by doctors asking me about my medical history. Eventually, a pulmonologist came in and explained that my lungs were covered in blood clots, but the main concern at that moment was that there was a huge acute saddle pulmonary embolism almost completely blocking my pulmonary artery (the artery connecting the heart to the lungs) and something needed to be done ASAP to prevent me going into shock. I was given three options: Being intravenous anticoagulant or “blood thinning” treatment with heparin for five days, risk brain damage by using a medication called tPA to bust up the clot, or undergo a procedure known as EKOS (EkoSonic Endovascular System), which uses ultrasonic waves and catheter-directed anticoagulation therapy to dissolve clots. EKOS, the treatment I chose, involved the insertion of a catheter into my groin, through my vein to the site of the blood clot, where the catheter dripped a blood thinner at the site of the clot to dissolve it. The catheter was in for 18 hours and when it was removed we learned that the clot in my pulmonary artery was dissolved. Now that the big clot was dissolved, the main concern was the other clots still in my lungs. We learned from the EKOS procedure that the pressures in my heart were high and showing signs of pulmonary hypertension because it had been under so much strain. I left the hospital on one of the newer direct oral anticoagulant pills.
Since the big clot in my pulmonary artery had been removed, my symptoms were minimal compared to what they had been. I still experienced shortness of breath while exerting myself. I continued to exercise throughout my diagnosis because my doctor’s only order was to stay active.
Combined Hormonal Contraception Linked to Life-Threatening Clotting
During this time, we also determined that the cause of my blood clots was from birth control as we looked at my medical history. Upon leaving the hospital, I scheduled an appointment with a doctor at the University of Pennsylvania specializing in pulmonary hypertension (PH), since my pulmonary pressure were still elevated. My PH specialist began a series of tests to determine whether I had CTEPH or chronic thromboembolic pulmonary hypertension. This is a very rare disease where pulmonary pressures are elevated because the heart is meeting resistance (in this case, blood clots) when it is trying to pump blood to the lungs and other areas of the body. I continued anticoagulation and was monitored to see if the clots would begin to dissolve on their own, but they did not.
Over this two-year span, I had everything from a chest X-ray to a VQ scan to a six-minute walk test. Eventually, to really measure my symptoms, I had a CPET, cardiopulmonary exercise test, to determine how well I could exercise in my condition. I ended up failing the CPET test, which led to another heart catheterization. This heart catheterization showed that the pressures in my heart were in range for mild to moderate pulmonary hypertension. At this point, I was 22 and because I was so young, my doctor thought surgery would be the only option to give me quality of life. The main concern for me being so young and being diagnosed with CTEPH was that I would eventually need oxygen and go into heart failure. My doctor sent my medical records to the University of California in San Diego (UCSD) for them to determine if I was a candidate for PTE surgery, or a pulmonary thromboendarterectomy. This procedure involve open-heart surgery, where surgeons place the patient on bypass to remove blood clots from the lungs. It is a highly specialized surgery and only a few hospitals in the world perform it.
I heard back from UCSD in the fall of 2019 and they told me that I was a candidate for PTE surgery. I scheduled my surgery in February of 2020, so I could have the surgery immediately after graduating college. I continued my workout regimen prior to surgery to prepare my body. I focused mainly on shoulder, chest, back, and core exercises because I knew these would be areas most affected by my surgery. I began testing at UCSD on February 12th to prepare for surgery. The facilities at UCSD were incredibly impressive. While PTE surgery is an incredibly rare surgery, UCSD performs this procedure every day and have the process down to a science. On February 14th (Valentine’s Day, ironic for an open-heart surgery, right?), I underwent my PTE surgery. My surgery involved nearly eight hours of cooling my body, stopping my heart twice, and removing the clots from my lungs.
Surgical Success
Alyson shares a photo that shows the blood clots removed during her PTE open heart surgery.
When I woke up the next day, I learned that my surgery was a complete success and all the clots were removed! Simply put, UCSD saved my life. I will forever be thankful to have had such an incredible team taking care of me throughout my time there. I was discharged seven days after surgery. When I left UCSD, my pulmonary vascular team said, “Alyson, you are an example of the perfect PTE patient. You came to us, had the surgery without complications, everything went smoothly, and now you’re fixed.” I am still on blood thinners and will be for life. I left UCSD on an older anticoagulant or warfarin, but switched back to the newer direct oral anticoagulants I had previously been taking a few months after surgery. Since I am on blood thinners and off birth control, I should not re-clot again. However, I am and will continue to take preventative measures, such as staying active and staying on anticoagulants for life, to reduce that risk.
about three to four miles a day and I continued that upon returning back home to
Pennsylvania. A month into recovery, I started to incorporate hills into my walks and noticed a huge difference in my breathing. I then started to slowly get back into a workout routine and again, noticed a huge difference in my breathing. Looking back, I did not realize just how compromised my lungs were. It feels so good to finally be able to breathe again!
Positivity in Recovery
Since my diagnosis, life has been a whirlwind. If you had told me a few years ago that I would fly to San Diego for open-heart surgery to remove blood clots in my lungs at age 23, I would have said that you’re crazy. There were days where I was frustrated and days where I was sad this was happening to me, but I always tried to make it through each day with a smile on my face. Throughout everything, I learned that I am so much stronger than I ever thought I could be. Having a major surgery was my biggest fear in the world and now, I can say that I conquered my biggest fear. My greatest triumph has been simply surviving! Since recovering fully, I started my first “big girl” job and now work in marketing at a law firm. I’ve also continued to stay active by working out daily. My blood clot diagnosis and open heart surgery completely changed my perspective on my health. I’m proud to say that I am now the strongest and healthiest I have ever been!
Since my blood clot diagnosis, I have become very passionate about spreading awareness about blood clots being a side effect of birth control and have continued to share my story on social media and my podcast called Her Everyday, on Apple Podcasts and Spotify Podcasts.
Overcoming my blood clot diagnosis and making a full recovery from PTE surgery has made me feel empowered in a way that I never imagined. I know now to never take a day that I am healthy for granted again. Every single day that I wake up with air in my lungs is a gift!
Photo Credits: Kailey Edwards Photography
Read more about about birth control and blood clots here.
Learn more: Contraception Decision-Making.
