Don’t Let Anyone Dismiss Your Symptoms: Haley’s Story

Don’t Let Anyone Dismiss Your Symptoms: Haley’s Story

Haley, a nursing student, found out what it’s like to be on the other side of the bed rail as well as how annoying it is to have her blood clot symptoms ignored or dismissed by a doctor.

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.

Click here to review the signs and symptoms of DVT/PE.

Share your story
The personal story is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.

Additional patient stories