My story begins when I was 11 years old. When I was 11 years old, I had passed out while walking up a flight of stairs in school. I did not know what had happened until I got to the ER in the hospital. I was later told CPR needed to be perform on me. At, this time many tests were performed on my brain since that was what the doctors thought was the cause of my passing out. All tests came back normal. I was just placed on seizure medicine after being hospitalize for 2 or 3 weeks and told to follow up with neurologist. I did not have a diagnosis but was told it may have been just a seizure since I was sick a few weeks prior to passing out. No further investigation was done since I did not have any other events but just had routine follow up with the neurologist.
2 years later, when I was 13, during gym class I had passed out again and this time I had woke up very fast from it. This time I had tests done for my heart since I told the doctors I had already had tests for my brain and nothing was found. After a few EKGs, a hotler monitor, echo, and stress test, I was then diagnosis with Long QT syndrome. It was a very scary feeling since I did not know what the results were on the stress test and many doctors were surrounding me. I was told I needed an ICD right away since I was consider high risk and needed to be put on medications. I was hospitalized while awaiting for my surgery. While many parents are the ones who have to explain to the child what is going on, I had it the other way around where I was the one explaining to my parents since they only spoke some English.
After my ICD was put in, I went back to school and normal activities. A few months after my ICD implant, I experience the first shock from my ICD while walking in the hallway in school, I went to the doctor and I don’t remember but I think a adjustment was made to the ICD settings. When I was 14, I had experience more shocks, where on two separate occasions I had two shocks each time, my medications dosage was increase and both times was when walking in a hallway of school. When I was 15, I was shocked again, this time it was 7 times in a row, it happen while waking to the bus stop. At this time time I felt alone as no one stopped to help me and bother to even ask if I was ok. I was placed on two other medications and settings to my ICD was changed. I also had ablation surgery when I was 15. I graduated high school with my class even through I had missed so much school.
I had routine check ups through out the years. I had genetic testing done 4 times and all 4 times no mutation was found for Long qt. I had ICD replacement in 2004 and 2010. I went to college and obtained my bachelor’s degree. Then when I was 28, I had recurrent VT recorded on my ICD and did not know about it until I went for my routine check up. At follow up about 3 weeks later, I had 4 more episodes of recurrent VT recorded on my ICD. I had ep study and then was diagnosis with CPVT. I had genetic testing done for the 5th time and this time a mutation was found for CPVT. I am currently taking nadolol and flecainide and have my ICD as my treatment plan. In 2015, I found out I had a small problem with one of my leads which it had higher threshold pacing causing it to use more energy to detect my heart. Due to my severe pain I was having in my incision, I chose to have the lead extraction and replacement of my ICD sooner, so in June 2016 I had lead extraction and my ICD replaced in which it was move to a new spot with a pocket vision.
I live a normal life. I am currently working full time and am in the middle of obtaining my master’s degree.