My name is Jessica, I am 22 years old and I have LQTS.

Throughout my childhood and adolescence, I was involved in many activities, including cheerleading, softball, and my high school’s marching band. While these activities were fun, they caused me to suffer from headaches, nausea, and sometimes temporary confusion and dizziness. Since I have no family history of SADS conditions or symptoms, physicians would consistently tell me that I was suffering from heat exhaustion and dehydration. I was told to drink water before physical activity and I was sent on my way. I never realized that these symptoms could be indicative of something more serious.

During my junior year of high school, I had a really bad cold and decided to take cold medicine (which I now know is something I should avoid). Since I was so sick, I was not paying attention to how much I was taking, and ended up taking the maximum dose one can take within a twelve-hour period. During chemistry class the next morning, I stood up to go to my lab bench, and once I got there, I fainted for the first time in my life. I was sent home and immediately was taken to my primary care provider. I was told that it was probably just a one-time thing since this was my first episode; however, we were not satisfied with this answer. We decided to go to the ER and it was a good thing we did! I was given an EKG among other tests and was sent home. At a follow up appointment, the physician said “Long QT” was noted on my EKG and we were told to see a cardiologist.  The cardiologist confirmed that I had Long QT Syndrome through EKGs, Holter monitors, and a tilt table test. Since being diagnosed, I was put on beta-blockers and have never had a second fainting episode.

The biggest challenge that comes with this diagnosis is the long list of medicines that should be avoided, including common things like Benadryl and Sudafed. As I mentioned before, every year I get really bad colds and I was told to avoid typical cold medicines, like DayQuil, by every pharmacist I talked to. Through a lot of trial and error, I learned that Mucinex (not Mucinex DM!) and cough drops work the best for my cold relief. I am so happy I found this combination because I no longer have to suffer through long colds. 

While this diagnosis came with many challenges and over the past 5 years I have learned to advocate for myself in healthcare settings. I am typically a quiet person, but I have learned to speak up when discussing treatment options with physicians. Long QT is rare and is probably not the first thing a physician thinks about when prescribing a medication. I definitely became the most annoying patient ever by asking a million questions and checking CredibleMeds every time my physician mentions a drug, but I have learned that if I don’t ask questions or check drugs, I am prescribed something that I cannot take and the pharmacist refuses to give it to me. As a future physician assistant myself, I understand that rare conditions can be forgotten about, and therefore, I have learned that if I am not annoying about my condition it will probably be overlooked. Even though I feel bad questioning their every move, all of my physicians have been extremely understanding and accommodating to make me feel safe. I definitely appreciate everything my physicians, PAs, and nurses do to ensure I am taken care of properly.