Amber's Blood Clot Survival Story

Story by Amber

Protein C Deficiency Leads to Deadly Clots that Almost Took This Otherwise Healthy 24 Year Old

I have strong memories of many blood clotting issues that up my father seemed to face constantly. When I was about five and he was in his late twenties, he was hospitalized for a deep vein thrombosis. Because my father had to deal with blood clots most of my (and his) life,  I became so accustomed to it that I never really thought too much about it.  That is, until June 2009.
 
On June 6th, 2009 I was spending the afternoon studying for an upcoming exam. My day was the same as many others, although I went to sleep early that night. However, I woke up suddenly later that same night and felt a pain in my left side starting at my lower torso up to just below my breast, and then from the side of my neck to the end of my left shoulder. Since it was not a terrible pain initially, I thought maybe I had slept awkwardly, and it was a muscle ache that would go away. As a healthy 24 year old with no previous medical conditions, it did not cross my mind that anything dire was happening.
 
The pain increased significantly by the next morning, and within 24 hours it was so bad I could no longer walk without limping; even talking caused excruciating pain. I set up a doctor’s appointment for June 8th, 2009. I knew in my heart something was really wrong but I had no idea what was really going on with my body. I had not done anything particularly abnormal in the preceding days, and had just returned from an uneventful weekend of hiking and camping with my boyfriend.
 
When I arrived at the clinic, the doctor asked me to rate my pain on a scale of 1 to 10, and I sheepishly answered 9. When I was being examined, any touch applied to those areas of pain would cause me to cry and even crying hurt.  During my chest X-rays, I was asked to hold my breath, but my breathing was very shallow at that point and taking deep breaths caused a dreadful stabbing sensation in my side. I nearly passed out from the effort I used with each X-ray, and I had to sit in front of a fan and place a wet towel on my face between the X-rays.
 
The doctors at the clinic informed me that there was something wrong in my lung that they thought might be a “minor” lung collapse, so they sent me to the ER based on this information.  Once at the hospital, an MRI was done which showed bilateral pulmonary emboli.  There was a large clot in my left lung and a small one in my right. I called my mother, who boarded the first plane. I was so confused and frightened about what was happening to me. After a week of hospitalization, and treatment with anticoagulants, I made a full recovery.  Because of my diagnosis, my mother explained to me that my father had recently been diagnosed with Protein C deficiency and that I had inherited this clotting disorder from him. Since learning about my clotting disorder, I have spent a great deal of time researching and learning everything I can get my hands on concerning it.
 
I even did my senior research paper on genetic clotting disorders. Today, I am on long-term Coumadin® treatment and have my PT/INR tested weekly. I am still able to carry on a happy normal life and am grateful that my Protein C deficiency was detected early to prevent any more complications later in life. That was the upside of the frightening and painful experience of my pulmonary embolism.
 
Nevertheless, I always feel a little out of place when I am the youngest person at my doctor’s office and when I meet new nurses who always respond, "My gosh you’re too young to be on coumadin therapy!" 

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