Friday, October 20, 2017
Writing is my passion. Writing is my talent. I can express myself better in writing than talking or saying something. I write because it's a joy; it gives me this sense of happiness that I can't find anywhere else.
Happy Reading and Keep on Writing!
Monday, September 11, 2017
I will always remember 9/11 as if it happened yesterday, but there's one memory that stands out above them all. As horrible as the terrorist attacks were, it brought the nation, my country, together. United we stood back then and I hope one day, united we will stand again.
Today I remember all those lives lost in New York, D.C., and PA in my thoughts and prayers. Let us never forget.
Tuesday, April 18, 2017
I ended the last post stating that long qt syndrome was a possible diagnosis. Here's the rest of how that became official.
Getting a second opinion meant going through another round of tests for both cardiology and neurology. On one side, my cardiologist needed to make sure it was long qt and not anything else heart related. At the same time, my neurologist still had to rule out epilepsy and anything else brain related. Most of the tests were what I had before: EKGs, echo cardiogram, EEG, a sleep deprived EEG, stress test, and an hour long MRI of my brain. Not that it matters (and this won't be in the published book form of my story), I had the MRI on my 14th birthday. The results pointed to the long qt and proved that I didn't have epilepsy.
That would've been great, if only my doctors could agree on a diagnosis. My cardiologist wanted to diagnose me with long qt, but he couldn't until my neurologist ruled out anything brain related. Even though I was cleared from having epilepsy, my neurologist wasn't satisfied and wasn't going to be satisfied until she could come up with some way to diagnose me with it. No lie, it's what she actually told us. All of the tests were done in March and April. May came around and we were still waiting on an official diagnosis. On May 14, my neurologist wanted to do another test: a 24 hour in-hospital EEG. That was my first ever night I spent in the hospital - hooked up with wires connected to my head with a monitor watching my every move at the bottom of the bed. It would've been okay if I had actually needed it done. It was all worth it because when I got discharged the following evening, I had what I needed: answers.
May 15, 2001 was the day I officially got diagnosed with Long QT Syndrome. It was, once again, a bittersweet moment. I was relieved that I finally had an answer after a two year battle that included having three seizures and what seemed like, endless tests. However, it became real. I was beginning to understand what it meant and how it was going to affect the rest of my life, as I was only 14. I was supposed to be looking forward to graduating eighth grade in June and starting high school in a few short months. Instead, I had to accept the fact that I had a heart condition and would have to take medication for the rest of my life despite that I looked and felt perfectly normal.
Coming up next: what exactly is Long QT Syndrome?
Saturday, March 25, 2017
I've decided to divide this in two parts. This first part will cover my third seizure and what led to a possible diagnosis. The second part will be the follow up testing and getting answers to a two year battle.
Once again, things went back to normal, well kind of back to normal, for a few months. Anxiety attacks were becoming the norm, however. My third seizure happened on February 23, 2001, a mere seven months after my last one. I was still 13. This is the seizure I remember the least about. My mom and I were at a local pizza store, waiting for our dinner to get done on a Friday night. It was always busy on those nights so we were just standing there, for how long, I cannot remember. I had glanced at the clock and that undescribable feeling came over me. I simply told my mom I wasn't feeling good. I know she asked for one of the workers to help me to the sitting/dining room since the actual seizure hadn't started yet. That's all I remember until I got to the hospital. They did manage to get me there and sit down, but I wasn't acting right and stood up right before the convulsing started. By the time the medics got there, the seizure had stopped, but I was stiff on the left side. The medics attempted and succeeded in walking me to the ambulance and put me on the stretcher, even though I had been dragging my left leg. The medic tried to administer oxygen, but I fought it and wanted nothing to do with it. Since I was still out of it, I was taken to the local hospital as supposed to the children's hospital due to the fact that the other one was closer. Once at the ER, I was placed into a wheelchair and admitted right away. On the way back to the room, I was able to answer basic questions and only got one wrong - questions like where was I, my name, the year, date, etc and at one point I was crying hysterically. I was transferred to the bed and that's when I started to become more aware. I remember resisting a bit when the nurse was trying to put a gown on. Once that was done, I was given oxygen and that's when I started to feel normal. Before the medic left, he stopped in to check on me and it took me a few seconds to realize who he was. I was monitored for a couple hours. My parents were given the option to have me admitted for observation overnight or get discharged. I was discharged with orders to follow up with my doctors.
I believe we first met with my pediatrician. As we were getting frustrated from not getting answers, we made the choice to get a second opinion at a better hospital, the Children's Hospital of Philadelphia. I saw a neurologist first and then the cardiologist. At the first appointment with my new cardiologist, I had an EKG done and based on that and my other records, he gave us a possible answer: long qt syndrome. It was a bittersweet moment. I felt relieved we were finally getting somewhere, but on the other hand, I was scared, based on that I had never heard of the condition before. Looking back, I don't think I really listened as my doctor went on to explain what it was. It may not have been final, but I was just glad that we had something to go with, a piece to a puzzle that had been missing for two years.
I'm going to end this post here as I don't want it to get really long. The second part will be up soon.
Wednesday, March 15, 2017
Friday, March 10, 2017
When I was 14, I was diagnosed with Long QT Syndrome and this is my story. In a later post, I will elaborate on what my heart condition actually is.
Every story has a beginning. It all started on March 10, 1999. It was a Wednesday and I was in school. Not long before lunch, I was in the language arts class and we were conjugating verbs. Everything was normal until my vision started to get blurry. No big deal as I thought maybe dust or something got on my glasses. It only got worse, though, and I started to worry. Do I say something to the teacher or the kid next to me? The answer would be no only because it felt like I couldn't talk. I probably did feel lightheaded or dizzy, but I can't really remember. The next thing I remember is coming to on a stretcher as the medics were carrying me to the ambulance - I came to on a flight of stairs and knew where I was and everything like that except for what happened. At worst, I thought I had passed out. As you have probably guessed, I was taken to the local children's hospital. The ride was quiet as I didn't know what had happened - my mom was in the back with me which brought me some comfort. Once at the hospital, I got admitted to the ER right away and an IV was started just as a precaution. What followed was several hours of laying there and eventually I went for a CT scan of my head and despite it being loud, I fell asleep. Soon after, I got discharged with no real answers. I was told I had an innocent heart murmur which was nothing to worry about (unrelated to the seizure) and to follow up with cardiology and neurology. I don't remember when I found out that I had a seizure, but I'm guessing it was some time when was I in the ER.
Over the next couple of weeks, I was evaluated by both a cardiologist and a neurologist. I underwent a battery of tests including the following: EKG, EEG, stress test, and an echo cardiogram. After all was said and done, we still didn't know what caused the seizure. It wasn't epilepsy or some other brain issue and no heart problems came up either. This kind of started a back and forth thing between both doctors as when nothing was found cardiology wise, we were told it had to be brain related, and vice-versa.
I was 11 at the time, but turned 12 amidst when I was getting the tests done. Since no explanation was given, my life slowly returned to normal. It was a little scary knowing I had had a seizure, but I ended up thinking that it was just something that would only happen once and that I never would have another seizure. And if I didn't have another one, it was okay that we didn't have an answer. Unfortunately, I would be wrong. But that's for my next post.
Thursday, March 9, 2017
I had a post scheduled for today, but unfortunately I encountered some technical difficulties. It will be posted at a later date in April.
Reminder: Tomorrow I am starting my long qt series, which is going to be called Meg's Long QT Journey. I have been working on a book about my experiences. I'm going to be sharing some parts. It's going to be sort of a rough draft and some parts of the series will be in no particular order. As of right now, I don't know how many parts there are going to be. I'm not trying to make long posts, although some might be. Please join me in my journey.