As a sophomore in high school, I started noticing changes in my body that I knew were not normal. At basketball practice, I had a really hard time keeping up with the other girls. This had never been a problem for me before- in fact, I was usually at the front of the pack. The more I would run at practice, the colder my hands and feet would get. I remember not being able to catch or throw the ball very well as I couldn’t feel my hands! I also started blacking out upon standing up or when standing for extended periods of time. In addition to all of this, I was ALWAYS exhausted.
My mom was my biggest advocate- she also knew something was not right. After seeing my primary care doctor, I was sent to a cardiologist in a nearby town. After performing an electrocardiogram (EKG), the doctor discovered that my resting heart rate was only 40. Because of this, and my family history of mitral valve prolapse, she decided to run a few more tests, one of which included wearing a portable heart monitor for 24 hours. We soon found out that all of my tests appeared to be normal. The doctor was still concerned, and referred us to a pediatric cardiologist in Fargo. He also found everything with my heart to be normal.
After this, we were constantly shuffled between doctors without ever getting an answer. I was told that depression was causing all of my symptoms. While this eventually became part of my struggle, I knew at the time that it was not the main problem. (In my next blog, I will talk more about this and how it inspired me to develop my personal platform).
My mom continued to push for an answer, as at this point, I was missing a lot of school from being so tired. I also had to drop out of basketball because I simply could not keep up, and it seemed to make my condition worse. By some sort of miracle, my mom heard about a doctor in Fargo that she thought could help me. We secured an appointment and went to see him.
Dr. Patron is actually an infectious disease specialist, but he is the one who figured out what was wrong with me. After describing my symptoms to him, he immediately had a list of things he thought could be wrong, and Postural Orthostatic Tachycardic Syndrome (POTS) was at the top of that list. Dr. Patron set up a tilt table test, and after “failing” it (passing out), I was diagnosed with POTS.
POTS is a disease of the autonomic nervous system that causes a variety of symptoms, the most prominent being an abnormally large increase in heart rate upon standing. Upon standing, I would experience a large jump in heart rate as well as my blood pressure dropping extremely low, which is why I would often black out or faint. My blood circulation was bad because of this, and that is why my hands and feet we always cold.
The good news was that POTS is a manageable disease. I was given certain lifestyle changes to make including drinking excessive amounts of water, increasing my salt intake, and doing at least 20 minutes of cardio a day (this was the most difficult, as having POTS makes you exercise intolerant, yet you have to do it to improve). I was also put on medication to try to lower my heart rate and to help raise my blood pressure.
My take away message from this story is to LISTEN TO YOUR BODY! You know it best. Without listening to my body, I may not have been diagnosed, and would have not known what to do to help combat my symptoms. While POTS is not technically a “heart disease,” it still affects my heart and the way it works. I have to be conscious of my heart and keeping it healthy. I am thankful everyday that Dr. Patron was able to diagnose me, and also thankful that my parents pushed for an answer.