I am a 21 year old female who was diagnosed with deep vein thrombosis (DVT) and pulmonary embolism (PE) in February 2012.
I grew up playing sports, enjoyed many outdoor activities, and loved spending time with my loved ones. I had just moved about 900 miles away from home to Northern Ontario to begin nursing school. I felt as though I was on the road to success and never imagined that my life could change so drastically in a single moment.
In November of 2011, I noticed redness and swelling in my right arm. I had difficulty lifting my arm above my head, and when I did, I was reminded of a quarter-sized visible lump in my underarm that had been there for the previous 3 years. I went to the Emergency Room (ER) and underwent an ultrasound. They explained that it was just a swollen lymph node that may be interfering with circulation in my arm. I explained to them that I have had this lump for many years and only the circulation issue was new. They told me to go home, take some Tylenol and it would likely clear up within a week.
It did not clear – I became unable to use my dominant right arm for even the simplest tasks. Writing became an issue and it was affecting my performance in school. I returned to the ER, and was adamant that something else was wrong. I felt like I knew my body, and my body was telling me things were not right. I remember a doctor telling me that because I am in nursing school, I may be overreacting about my symptoms. I felt dismissed, insulted, and helpless.
At Christmas 2011, I flew home to see my family. As I lay down in my bed on Christmas Eve, I felt a sharp, crushing pain in my chest. I could not move or breathe. I panicked, because I could not breathe in enough air to call for help. I laid there helplessly with my hands clasped over my ribs.
After some time passed, I managed to turn on my side, which relieved some of my pain. I did not want to go to the ER on Christmas Eve, because of flashbacks of the previous doctor’s dismissal of me during my first visit. During the next few days, I had chest pain periodically, but I wanted to see if it would get better on its own – and it did.
I flew back to Northern Ontario after Christmas with high hopes of finishing my nursing program. Unfortunately, my chest pain returned on Valentine’s day. This time, I listened to my body, and went to hospital. After undergoing another ultrasound, chest X-ray, and a CT scan, I discovered that a blood clot that originated in my right arm had broken off and traveled to the major veins in my chest, arm, and neck, and both of my lungs. I also had a complication of a pulmonary infarction due to lack of oxygen to my lungs, because of the delay in diagnosing my blood clot. I was emergency airlifted to Winnipeg, Manitoba (Canada) where there was a hematologist who could take better care of me. I was placed on blood thinners and hospitalized for one week.
The reason for my blood clots is a condition called Thoracic Outlet Syndrome. This means that my shoulder bone and first rib are too close together, which causes the blood circulation in my arms to be sluggish. I was also taking hormonal birth control pills that added to my risk that I have since stopped. I had genetic testing completed which all came back negative. I was on anticoagulation therapy for 4 months (Feb 2012 – June 2012) and now I am on the aspirin 81mg Aspirin (low dose) until at least the 2014.
I now have trouble on exertion and cannot play sports like I used to. I become short of breath easily and experience dizzy spells on occasion. The swelling in my arm has not gone away, and the lump in my underarm is still there. I missed mandatory school hours during my hospitalization, so fell behind in my required class hours. I went from feeling like an active, healthy woman to feeling as though my life revolved around my blood clots. Nevertheless, I am determined to complete my courses with A grades and I am excited about my future career as a registered nurse. I believe I can give great patient care since I have experienced being in the patients’ shoes, and feel I can be more sensitive to their plight.
Through my story, I hope to help spread awareness of blood clots and inspire others to appreciate each day that is given to us. I know that I am lucky to be alive and I hope to help others by sharing my story. If you are unsure if you have a DVT/PE, please do not wait to be seen or let a doctor dismiss your symptoms.
Take Home Messages
- Persist when you have symptoms and you feel ignored by a doctor.
- Interruption or sluggish (slow) flow of blood increases possibility of a blood clot
- Birth control pills increase risk for blood clots
- Listen to the signals your body gives you and act if you have signs and symptoms that worry you
- Blood clots happen in younger people, although are less likely
- Early diagnosis is optimal to prevent complications
- Blood thinners (anti-clotting medication) are more effective for venous blood clots than aspirin
- Life can go on even after a life-threatening clot
The National Blood Clot Alliance’s mission is to advance prevention, early diagnosis and successful treatment of blood clots, clotting disorders and clot-provoked strokes through public awareness, advocacy and patient and professional education.
