The day started out cool, but the temperature rose throughout the afternoon. We had run laps in gym class and then I went to class woefully overdressed for the weather. As I sat down in the desk the three minute warning bell sounded.
A friend saw another friend and me deep in conversation in the grocery store parking lot, she thought it would be funny to drive up behind us and blow her horn to get our attention.
The guy from the mail room saw me in my cube, intensely studying and errant database for a missing formula. He dropped a fifty pound box behind my chair to see if I'd jump.
I stopped at the top of the ramp to yeild to oncoming traffic. The woman in the car behind me didn't see me stop and hit the back of my car hard. I began shaking violently. Talking with the police at the scene I was still shaking for the adrenalin.
I was in the parking lot walking to the store. Suddenly the car beside me blared it's horn as it's owner unlocked the door with a key bob.
Church is quite, all but the preacher's voice. The woman beside me forgot to turn off her cell phone. It suddenly began to blare a popular song.
I woke up that morning feeling ill. My head was pounding and I was sure I was getting a migraine, but I went to work anyway. The traffic light Turned green and instantly the car behind me blew his horn in impatience. As I drove along the winding road the sun was blinking behind the trees and I become disoriented.
All of these are descriptions of the times when a startle has caused me to faint. They are the everyday hazards of living with long QT syndrome. My most frequent triggers for torsades de pointes tend to be heat, illness and startle. I can control some things. I turn my phone off when I'm sleeping and have an alarm clock that wakes me up slowly. I avoid medications and try to stay hydrated when I'm going to be hot or sick. I take my medications. But still, there are just so many situations that I have no control of.
LQTS is invisible. It is only diagnosed with ECG testing and genetic testing. Even after someone dies of it there are no observable characteristics. My friends didn't know not to startle me until after the fact. The person locking their car or blowing their horn can't tell that it could scare me to death...literally. These are just everyday things that people do. But they can be very bad for me.
My friend asked me how I deal with it. Really, I don't walk through life thinking about it. I don't even think about it when I'm lying down to go to sleep. For the most part I just accept it and move on. But when I've been startled and my heart is beating wildly and my head is spinning, it gets scary.
Long QT syndrome is a genetic condition characterized by a prolonged resting phase of the heart. This lengthy resting phase predisposes the individual to ventricular tachyarrhythmias, which can be manifested by syncope (fainting) and sudden cardiac death.
7 comments:
oh my...I have not heard of this before...thanks for sharing...I hope this did not happen all in one day! that would be alot! and I am glad you are ok after the accident! smiles
Thanks for stopping by. No these are incidences that happened throughout my life, mostly before I was being treated for LQTS. There were a few others times. But it is scary when it happens.
Wow, that's an amazing condition, an unfortunate one. I have never fainted before but have felt close a couple of times. Hopefully you didn't sustain any injuries as a result of these events. And hopefully your co-workers now understand that surprises don't go over well. I hope you never have a surprise birthday party!
Thank you She. Yes, it is unfortunate
in that my father died of it at the age of 56 and my brother at the age of 48. Unfortunate that it is a leading cause of SIDS and young athletes dying on the playing fields. Somehow I avoided passing it along to my sons and my daughter is only borderline. They can't prove or disprove that she has it until they uncover the gene that is causing our problems.
I was not hurt in the class room, only totally humiliated. My friend in the parking lot so more than embarrassed and apologetic. Even after the paramedics took me from my cube I had to have HR intervene with the mail clerk. The police officer caught me before I fell to the ground. I broke my collar bone when the car horn went off, but the owner was so apologetic. I slid to the floor and disrupted the service at church, I'm on the ministry leadership team. What an embarrassment! And I wrecked my car the day the headache and the flashing sun light after the startle made me faint. All of these times I spent at least a week in the hospital getting a full battery of test that until the year 2000 no one understood. The syndrome wasn't even named until the year I was born. And the significance was overlooked with my father in 1966 when a cardiologist wrote on a report "significant prolongation of the resting phase of the heart, probably due to hypokalemia". In 2004 I had to explain to my surgical oncologist the significance of the condition to the surgery that she would be doing. She'd never heard of it. Thanks to my son, and to massive media awareness it has been recognized in the Metro Atlanta area and most people here are aware of it. It is also getting National awareness which is great, because my family is rare in that we die so elderly of this. Most people who die of it do so before the age of 30.
I can relate all too well,as i have Long QT type 2. Ive had too many syncopal episodes to even count,14 cardiac arrests & 5 Icd's plus multiple revisions. Even after all of that I refuse to call it a disease,to me its a condition. But one thing you said isnt fully factual-undiagnosed & untreated,yes,people do die before 30. But with proper diagnosis & treatment (beta blockers,ICD's,avoiding triggers,etc) a person can lead a long,fulfilling life. I'm 31,my aunt is 60 & were both here,along with countless others. It's been proven that the QT interval decreases with age. I've done so much research because I do believe that knowledge is power & I'm a stickler for facts about LQTS because one can live a relatively normal life with it
Thanks for dropping by Dana. Sometimes I feel like a lone crier for adults living with LQTS. However, I did not say anywhere in my post or comments that people who have LQTS die before 30. Actually I will be turning 55 this year and my father was 56 and being treated with beta blockers when he died. My brother was 48, and I believe that I pointed that out. I did say that some instances of SIDS and young athletes dying on the playing field are caused by LQTS, and that statement is overwhelmingly correct. I didn't mention anything about their treatment status because presumably if they have a diagnosis and are being treated they wouldn't be on the field to begin with and an infant would sleep with a heart monitor. I don't mean to sound snappy here, but no one likes strangers putting words in their mouth. That being said, I really do appreciate that you stopped by and left a comment.
I take no offense but in your comment above mine it says in the last sentence -"It is also getting National awareness which is great, because my family is rare in that we die so elderly of this. Most people who die of it do so before the age of 30". I wouldn't point it except that the condition is so misunderstood as it is,people need facts. I appreciate you taking the time to bring awareness to LQTS
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