Getting Past “I Can’t Believe This Happened to Me” – Alyssa’s Story

Categories: Patient Stories

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My name is Alyssa and I was dAlyssa Coiroiagnosed with multiple pulmonary emboli (PEs) in January 2012 at the age of 21. I have finally gotten past the “I can’t believe this happened to me” stage and have finally adopted the “I can do something about this” attitude. My three-year anniversary of pulmonary emboli is coming up on January 20, 2015. I am 24 now and I think that my story could be very eye-opening, especially for young women.

My story begins right after the first semester of my senior year at Villanova University, where I studied accounting and was co-captain of the Villanova Dance Team. I had this nagging cough that wouldn’t go away, but I thought to just push through finals and deal with it when I went home to NJ. A week or so later, around Dec. 20th, I began to cough up blood and went to the medical center in my town. I was nervous about the blood and was supposed to travel back to Villanova to dance at a basketball game that night. The doctor there diagnosed bronchitis, and gave me an antibiotic to start taking right away. I decided not to dance that day (thank goodness, as you will see later on – a series of decisions like this could have actually saved my life).

I started taking the medicines, but that night, I had unbearable chest pain. I couldn’t sleep, couldn’t lie down, and could barely breathe. I was crying all night until my mom took me to the ER around 6:00 am. I was so scared. They did an x-Ray, and decided that the pain was from strained ribs after coughing so much. I was skeptical, but I also saw the x-Ray and nothing seemed too alarming. They gave me a different antibiotic, in case I was having a reaction to the original, as well as some pain medication. I willed myself through the holidays, but nothing got better. I never slept, because it hurt so much to lie down and I was still coughing up blood. On top of those symptoms, I also started to run a bit of a fever. A few days after Christmas, I went to my regular doctor, again, explained all of my symptoms, and she sent me for a CT scan (without contrast dye). The scan came back with a ‘foggy’ patch over my lungs that she diagnosed as pneumonia. Again, she gave me a variety of medications. I was supposed to go on a trip to Disney World for New Years with my boyfriend, but I was still coughing up blood and not feeling well. We decided to reschedule our trip, because I really didn’t see myself having the strength to travel (another decision that probably saved my life).

Fast forward to around January 19th, nearly a month after my first doctor’s visit. It was the night before I was supposed to return to college for my final semester. I still had excruciating pain and I had tried everything:  Heating packs, blessings from my Italian great grandmother, hot baths, countless medications and doctors visits.  Nothing helped. Everyone kept telling me it was the pneumonia and that it would take time to heal, but the pain was so unbearable. I hadn’t slept in almost a month. My wonderful mom stayed up countless nights with me to calm me down while I tried to assure her I would be okay on my own (but she was still very nervous about me returning to school).

That Sunday night I went to the ER again on the insistence of my parents. We called my doctor and she was concerned that I might have had pleurisy, an inflammation of the chest and lungs, as a result of the pneumonia. The ER doctor seemed very concerned with my high heart rate, shortness of breath, and how I had been coughing up blood. They gave me a shot of pain medication, and scheduled another x-Ray and CT scan. After the x-Ray, the doctor saw some shadiness over my lungs, and said he was going to do a CT scan with contrast dye. He said the worst case would be a blood clot.

After the scan, he came back and told me I had multiple clots in each lung. He couldn’t believe I had survived as long as I did with all of the clotting. He immediately asked if I was on birth control (I had been for four years) and he made me immediately remove it. I ended up getting blood thinner injections and spent four days in the hospital.

Since my release, I have seen a pulmonary doctor, who explained I had more than 10 blood clots in each lung, and a hematologist, who ran several tests. We discovered that I have Factor V Leiden (homozygous), Factor II Prothrombin, and other protein deficiencies, that result in a higher likelihood of blood clots. I have been placed on blood thinning medication for life and get routine blood tests every two weeks. I am thankful that I was young and healthy enough for my lungs to recover. Sadly, I was not allowed to continue dancing (for fear of bleeding) during my last semester of college. My teammates and friends were extremely supportive, but it was still really hard to miss out on dancing at my last college nationals dance competition. Despite all of this, I only missed a few weeks of school and was able to graduate with honors.

At the end of the day, I am grateful for all of the support from my friends and family (especially my parents, bless them) and all of the decisions that prevented the situation from becoming worse. I think it is important to spread awareness, especially to young women, because so many are prescribed contraceptives without being fully warned of the consequences – especially those with undiscovered clotting factors.

Take Home Messages:

  • Young, healthy people get blood clots, too!
  • Pulmonary Embolisms are often misdiagnosed (especially in young people)
  • Doctors do not test for clotting factors/disorders when prescribing birth control
Author: L F

2 Responses to "Getting Past “I Can’t Believe This Happened to Me” – Alyssa’s Story"

  1. Jenna
    Jenna Posted on January 13, 2015 at 2:59 am

    It is so good to see a community of people that are going through the same thing! Although this is unfortunate, it is good to see that there is a support group out there!

    I am starting a blog about my experience and would really appreciate it if you could check it out!
    https://bloodisthickerthanwaterr.wordpress.com

    Please do not hesitate to comment/leave feedback
    Thank you so much!!!
    Jenna

  2. Lacey
    Lacey Posted on January 14, 2015 at 9:08 pm

    I am SO glad I found your story! I am 21 years old and I was diagnosed with a DVT AND PE last May. Like you, I got this really bad cough over last winter that just never went away. I still ran and did everything normal and it never slowed me down. Until I started getting this really bad pain in my left side. The next morning I woke up in agonizing pain, could not breathe or walk without it feeling like I was stabbed in the side. The next 3 days I just sat around while the pain slowly eased. I was in no pain after, but was still coughing up blood. I went to an urgent care clinic where the doctor didn’t even examine me he just threw me a RX for a steroid to help the coughing blood. The next weekend the pain began again, and after it ceased we went to my family doctor who knew right away I have ribs knocked out of place. He put them back in for me and gave me a stronger round of steroids that did make the coughing stop! FINALLY! But then a few days later the pain came back. This time he put the ribs back in place for the second time, and prescribed a generic low dose brand of xanax to me. It helped my muscles around my ribs relax! I was still in a lot of pain but it was a lot better.
    After a week I started feeling this pain in my groin that felt like I pulled a muscle. We went to a doctor who told me it was probably a cyst on my ovary and to get an appointment with my OBGYN. I couldn’t get in to the office for another week. So through Easter weekend I was in a lot of pain and heavily medicated on pain killers. We ended up going into the ER telling them the info I was given, so all they did was test me for female issues. Everything came back, and NO I did not have a dead ovary (omg). My mom asked the discharging doctor if it could be a clot and he said no. Even though my leg was swollen! Two days later I couldn’t hardly get out of bed. I got to my OBGYN and she called for an emergency ultrasound on my leg. Sure enough the DVT went from my groin to my ankle. They gave me a CT scan and found a tiny clot in my left lung. I was put in the hospital and treated for a few days. Now almost 10 months later the PE is gone, but the DVT still remains and about 4 months ago showed small signs of improvement. I can’t help but wonder what would have happened if someone had just thought of all the possibilities. I felt like the doctors who did try to diagnosed me just gave up on me and all. Granted I was 20 years old. I’m so grateful to hear someone around my age had this happen!
    So far they have done one genetic test that came out negative. The other can’t be done until I am off Coumadin. Other than that they have no idea how this happened (some wonder if it was my birth control, even though it was a low doser hormone)
    Thank you for sharing your story! It gave me goosebumps reading, but still has made me feel as though there is hope still left that I will make it out of this okay!
    Lacey