I Want to Use My Experience to Help Others: Samantha’s Story

I Want to Use My Experience to Help Others: Samantha’s Story

I had zero problems with my health until three years ago, when I was 19, and started on birth control pills to treat acne that did not respond to over the counter medicine.  I am a non-smoker, never had any weight problems, and have not been in the hospital since I was two years old.  My gynecologist did not foresee any problems with my decision to take birth control pills, and it seemed like a good decision at the time.

First, let me present my family medical history.  My mother and one of her sisters, my aunt, told me they had blood clots, although they never saw a doctor to diagnose the clots, nor had any treatment with blood thinners.  Instead, they chose an herbal remedy.  My mother’s family also has a history of heart attacks and stroke.   However, it never occurred to me that blood clots can be hereditary, and I had never heard of a blood clotting disorder.   The doctor who prescribed the birth control pills did not ask me about blood clots in my family.  I recall now that the history checklist I filled out included DVT, but was unaware then that DVT stood for deep vein thrombosis or that it was a blood clot.

Not surprisingly, it came as a complete shock to me when, after a month on birth control pills, I woke up with an immense pain and noticeable swelling in my left leg to the point that I could barely walk across the room.  I was extremely confused and agitated, because I had no recollection of any injury to explain my symptoms.  I looked online to see what it might be, and several sites suggested that my symptoms might be a blood clot, so I had my boyfriend at that time drive me to the hospital.

I wasn’t certain whether my symptoms meant I had a blood clot, and I think the ER staff thought it might be a sports injury.  It took about 6 hours before they determined it was a blood clot, and almost 12 hours before a hospital bed was available.  I was placed in the progressive care unit (PCU) because my blood clot ran the entire length of my thigh, the largest DVT the staff had ever seen.  They gave me shots of low molecular weight heparin right away and medication to minimize my pain.  They moved me to the main floor of the hospital a few days later, because I was doing better.

The doctors reminded me repeatedly that I needed to report any chest pain or shortness of breath since a DVT can cause a pulmonary embolism (PE).  The night they moved me into the regular room, I felt a slight pressure in my chest, and I told my doctors about it the next day.  Two of them brushed it off, but the third one came back and told me to say more about what I was feeling in my chest.  This doctor ordered a CT scan that showed multiple clots in both of my lungs.  They rushed me back to the PCU so they could monitor me more closely.  Just think… I had multiple PEs, potentially lethal, and I did not even know they were there.   As strange as it sounds, I sometimes feel as if I would prefer a visible life-threatening injury, even a bullet or stab wound.  The fact that a blood clot is hidden within my body and can still travel to the lungs is terrifying!

Eventually, I got better and was sent home.  While I was in the hospital, I was tested for many different blood clotting disorders, and tested positive for heterozygous factor V Leiden.  As a result, I will be on warfarin for the rest of my life, because of my risk for developing another PE. Needless to say, I stopped taking birth control pills.

While I wish I had known that I had factor V Leiden, I am glad that our family has this knowledge now.  My mother has not been tested to see whether she is positive for factor V Leiden, and not interested in finding out.  She thinks that there is no sense in worrying about something she has dealt with her entire life.  My father was not tested, but neither he nor anyone in his family had any blood clots.

I also try to write reports at school about factor V Leiden because I want to increase awareness about blood clotting disorders and how they may increase blood clotting risk.  The greatest impact this experience had on me is my choice of career.  I am pursuing a degree in Medical Assisting, but hope to become certified as a pharmacy technician, and perhaps choose nursing in the future.  I want to use my experience to ease the difficulty and fear that others may have in coping with illness, particularly those related to blood clots.

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