Tuesday, April 18, 2017

The Third Seizure Part 2 and Diagnosis #Meg's Long QT Journey

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?

❤Meg❤

Saturday, March 25, 2017

The Third Seizure Part 1 #Meg's Long QT Journey

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

#Meg's Long QT Journey: The Second Time's the Charm (Or Not)

The Second Seizure

At the end of my last post, I finished by saying that life returned to normal. And it did for awhile. That all changed sixteen months later on July 8, 2000 when I was13. My family was down the shore for the day. Sometime in the afternoon, we had been watching the rides for a couple before we turned around to continue on our way. As soon as we had turned around, I felt a seizure coming on. You may be thinking how did you know that? With each of my seizures, I experienced this feeling that's undescribable (maybe if you're someone who's had seizures, you know what I'm talking about). Anyway, I grabbed my mom's arm and simply said I didn't feel good; I didn't want to fall and hit my head since we were on a boardwalk. We had just passed a bench and she tried to lead me to it. Tried, I say, because I couldn't move. My legs went stuff and yes, I felt it. It was like my brain was telling my body to move, but I just couldn't. Imagine telling yourself to do something and you can't - it was one of the scariest things I have ever been through. I did go into the seizure a few seconds after that, with my parents laying me down and my dad cradling my head. A pier attendant administered oxygen to me until the medics got there. Now, this is where it gets interesting. Obviously, I was taken to the hospital. However, I can remember some things before coming completely to. I was able to feel them rolling the stretcher across the boardwalk (in taking me to the ambulance) and people talking, but it didn't make sense to me. While I was experiencing this, all I saw was white. This sensation didn't last long and then I went back out. I came to sometime in the ambulance on the way to the hospital, which was like twenty minutes away. Once again, I was observed for a couple hours before getting discharged with the orders to follow up with my doctors. This time around, I only had two tests: an ambulatory EEG and a tilt table test. The ambulatory EEG was like a regular one, except that it was done outside the hospital for 24 hours; the two differences are that the wires attached to your head are wrapped in gauze so they don't fall off and attached to a box that had to be plugged into a wall. The purpose of the tilt table test is to recreate an event - to try to make you faint, etc. You're strapped to a table that's then tilted to an upright position (almost as if you're standing but not quite). The first twenty minutes or so is spent to see if something or any symptom will happen on its own. In my case, nothing did. Once back down, I was given a drug to accelerate my heart rate and then it was back to the tilted position. It was supposed to feel as if I had been running. It was much worse. The pounding sensation was the most uncomfortable feeling in the world. It's the same amount of time each round, but within ten minutes, I started to feel lightheaded and like I was going to faint. After a couple minutes, I was told that my blood pressure dropped really low and despite how I was feeling, there was talk about doing it again. It wasn't and once I was free and able to sit up, I was given juice and crackers, which helped me feel better. At the same time, my parents who weren't in the room were told I had had an event. This was a test I don't ever want to experience again. After all was said and done, my family and I still didn't have answers.

It was around this time that I knew something had to be wrong with me; I just didn't know what it was. Seizures are most common in epilepsy and even though I was cleared from having it, I couldn't help but wonder if I had that anyway. I started having trouble with anxiety, but more on that later. At 13, I didn't want to be going through any of this; I just wanted to be a normal teenager. And since I was going through such a hard time, I just wanted and needed answers.

The much needed answers would be coming in a few months. But first, another seizure would occur. I'll be writing about my third seizure in the next post and then finally I will be explaining what long qt syndrome is.

~Meg~

Friday, March 10, 2017

#Meg's Long QT Journey: The First Seizure

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.

~Meg~

Thursday, March 9, 2017

Tech Probs and New Series

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.

~Meg~

Wednesday, March 8, 2017

Bookshelf Scavenger Hunt: Kindle Edition

I came across a bookshelf scavenger hunt, but I decided to base it on what's on my Kindle app instead. Let me know if you want a bookshelf edition.
Find an author's name or title with the letter Z in it: I picked an author's name as well as a book title with the letter Z.



Find a classic:



Find a book with a key on it:



Find something on your bookshelf that's not a book: Not applicable

Find the oldest book on your shelf:



Find a book with a girl on the cover:



Find a book that has an animal in it:



Find a book with a male protagonist:



Find a book with only words on it:



Find a book with illustrations in it: Since this is on my kindle app, I don't know what books have illustrations in it until I read it, so I can't answer this.

Find a book with gold lettering:



Find a diary (true or fictional):



Find a book written by someone with a common name (like Smith):



Find a book that has a closeup of something on it:



Find a book on your shelf that takes place in the earliest time period: This takes place from 1625-1628.



Find a hardcover book without a jacket: Not applicable

Find a teal/turquoise colored book:



Find a book with stars on it:



Find a non-YA book:


There you go.

Happy Reading and Keep on Writing!

~Meg~



Sunday, March 5, 2017

A to Z of Books

I can't tell you how many times I've heard that to be a writer, you have to not only write a lot, but read a lot as well. I've loved reading and writing for as long as I remember. For fun, I've chosen to do an A to Z Bookish Survey Tag.

Author you’ve read the most books from: Ann M Martin, when I was a kid, I enjoyed The Baby-sitter's Club series and the Baby-Sitters Little Sister series.

Best Sequel Ever: 204 Rosewood Lane by Debbie Macomber; My favorite character in the whole series (Cedar Cove) is Olivia, but I had really wanted to read Grace's story.

Currently Reading: Gone With the Wind by Margaret Mitchell and A Sister's Promise by Karen Lenfestey

Drink of Choice While Reading: I don't have a particular drink while reading, but my favorite drink is water.

E-reader or Physical Book? Physical, although I prefer an e-reader for travelling/vacation or long bus rides.

Fictional Character You Probably Would Have Actually Dated In High School: Maybe Four from Divergent

Glad You Gave This Book A Chance: Thirteen Reasons Why by Jay Asher

Hidden Gem Book: White Oleander by Janet Fitch

Important Moment in your Reading Life: Probably when I had to read Harry Potter and the Sorcerer's Stone for school. It wouldn't have been something that I would have chosen to read, but it started my love for Harry Potter.

Just Finished: Only Time Will Tell by Jeffrey Archer

Kinds of Books You Won’t Read: I pretty much read anything, but I don't read a lot of graphic novels/manga or erotica.

Longest Book You’ve Read: Les Miserables

Major book hangover because of: Harry Potter and the Deathly Hallows

Number of Bookcases You Own: 3

One Book You Have Read Multiple Times: The Fault in Our Stars

Preferred Place To Read: anywhere; I love to read when I'm at the beach during the summer

Quote that inspires you: I have a lot, but I'm going to go with this one - "It's much better to do good in a way that no one knows anything about it." - Anna Karenina

Reading Regret: not reading Anne of Green Gables; I had gotten it as a gift, but couldn't get into it and I never went back.

Series You Started And Need To Finish (all books are out in series): Divergent (I have to read Insurgent and Allegiant, as well as Four) and The Hunger Games (I have to read Mockingjay).

Three of your All-Time Favorite Books: To Kill a Mockingbird by Harper Lee; The Outsiders by S. E. Hinton; and The Five People You Meet in Heaven by Mitch Albom

Unapologetic Fangirl For: Harry Potter - even though Harry is my favorite character, my other fave character is Ginny Weasley because she reminds me of myself.

Very Excited For This Release More Than All The Other: Right now, it's If Not For You by Debbie Macomber.

Worst Bookish Habits: Not so much for reading, it would be not writing a review right after I finish reading a book. I do book reviews on my other blog, Writer's Crossings, but they take me awhile to write up as I want to convey my thoughts just right.

X Marks The Spot: Start at the top left of your shelf and pick the 27th book: The Secret Life of Bees  by Sue Monk Kidd

Your latest book purchase: Like by Bart Hopkins

ZZZ-snatcher book (last book that kept you up WAY late): So hard, but basically any book that I'm enjoying while I'm reading it at that moment.

Happy Reading and Keep on Writing!

~Meg~