Well for those of you who aren't aware of the full story pertaining to what I'm going through or how this all ensued or when this began, I will tell you. I will start from the beginning and take you through to the bitter continuing end.
The story begins in 3rd grade when I suffered my first migraine. I remember it very vividly. My class was rehearsing a play outside and I had horrific pain in my head, and from that day on I endured chronic migraines. In sixth grade I started to play basketball year round and this is where the story starts to mount. In practice, but more often in games there were occasions where my heart would race causing me to blackout. Now when I say blackout, I mean my heart would race and that would lead to tunnel vision and then I would lose total eyesight causing a blackout but I continued to have full control of my body. We now know this has something to do with the adrenaline.
I saw a neurologist during middle school all the way through college, to treat my migraines and we informed him of the symptoms I was experiencing. He referred us to a cardiologist when I was in 7th grade. I had all sorts of tests done examining my brain and my heart but to no avail. The consensus was that my migraines along with dehydration was causing the blackout episodes. So as high school approached the blackouts didn't really occur as much because I was getting zero playing time during games, and that was when my adrenaline seems to cause problems. So during practices and workouts my heart would race but it was not as bad as when my adrenaline was pumping during a game so I just figured I was hot and dehydrated. So that was middle school and high school. That was when the first signs appeared but any kind of heart disease went undetected, which is no surprise as they still do not know exactly what is wrong with me.
So then I went to college and continued to see my neurologist and cardiologist and under went further tests and such. I even tried wearing a heart monitor during my freshman year of college for the second time, the first attempt being in 7th grade. The monitor straps around the waist and it is very bulky and hard to workout with and the battery dies often. On top of that, it is very hard to record a racing heart especially being under duress, so I had no luck with that. I had a few more blackout episodes when playing pick up basketball games, but it wasn't until 2007 that I started to pass out. I was at a String Cheese concert in Charleston and the only thing I had drank that day was soda and wine, and I was certainly dancing like a full on hippie. My heart began to race and my vision became blurry so I decided to leave the crowd, and as soon as I got to the outskirts of the crowd...PLOP. I landed face down on a blanket this couple was canoodling on. I woke up without knowing how long I had been unconscious, minutes if not longer, and as I looked at them looking at me, nothing was said so I preceded to walk off. I went and bought a Gatorade, once again thinking I was dehydrated. That was my first episode of passing out and now I know it was not due to dehydration, although it could have been a factor.
The next couple years weren't so bad because my schedule was filled with work and school and what's more, I had two arthroscopic knee surgeries so I wasn't doing too much running around. Throughout my college years I learned what the oncoming signs of the episodes were and learned to stop what I was doing in time to prevent passing out. That is until 2009 when I started to have very frequent and longer PVC's (Pre-Ventricular Contractions) which are pretty much skipped heart beats. The PVC's eventually started to occur all day, every day.
The second time I passed out took place in Portland,OR when I was walking from the employee parking lot across the street to the Rose Garden. My heart began to race and I felt dizzy, which lead me to face plant at the edge of the main road that runs right in front of the Rose Garden. I awoke to a crowd of coworkers and managers who were also walking to work, as well as an ambulance, police cars and stalled traffic. All this ensued right before a NBA Portland Trailblazers game allowing a large group of people around, causing quite a scene. It certainly is an extreme way to get out of work. I was taken to a hospital that was only a few blocks away. An EKG was taken and the doctors read it as abnormal, seeing a high amount of PVC's and suggested I see a cardiologist. Well I had no health insurance so I was not ready to spend hundreds and thousands on tests and office visits and medicines and, considering my disease is still undiagnosed it might have been a waste. So I walked out of there at night not knowing what direction to walk, but did eventually find the Rose Garden and my parked car and had a very quite drive home.
The following month in Portland, after teaching swim lessons, I passed out again. I was teaching lessons for 4 hours in a heated therapy pool and after I went for a quick swim until I felt too dizzy to continue. I went back into the locker room to change and go home for the night when my dizziness intensified and my heart began to race. I sat down on the bench in front of my locker, put my elbows on my knees, and my head in my hands and the next thing I see is a group of coworkers and EMT's standing over me. Just like the ER doctors, the EMT's also said I had a very unusual high rate of PVC's, and they suggested I go with them to the hospital. I refused due to financial reasons and because when you leave the hospital you have to find your own way home, so the boss directed a coworker to drive me home. It's a good thing I did get a ride home because I was still very dizzy which had never happened before. Later I found I was suffering from a concussion. I'm not sure if my head hit the locker or floor first, but I do know that my forehead hit the carpet so hard that I had rug burn on my forehead that was bleeding. I continued to feel extremely dizzy the next couple days as if I was highly intoxicated and experiencing the spins, but it turned out I was suffering vertigo as a reaction to the concussion. The only way to rid myself of vertigo was to perform re-positional physical maneuvers that usually consisted of lying flat on the back while turning the body and head in several directions which creates the spins very intensely. I experience vertigo for little over a month. Anytime I turned my head either left or right I felt as if I wanted to throw up. But of course once again I thought I was just dehydrated when I passed out this time because I was in a heated pool for multiple hours and then swam and drank an insufficient amount of water that day. Once again, I know now that may have been a factor but that is not the reason my heart raced and caused me to go unconscious.
Next I arrived in Glacier for the 2010 summer. It was my first night in town and I was out hanging with a group of friends when I noticed my heart started to race and I thought I was going to pass out, but we were all headed home so I thought I could make it to the car to drive back to our dorms. Well I made it to my car, but my dizziness only increased and my heart continued to race so I had my friend drive instead. We finally made it to the dorms, parked the car, and then I attempted to walk to my dorm. I managed to walk no more than 20ft when I passed out head first into a tree. When I came to, it was dark and I was hidden in the woods. It was rainy and cold, and my heart was still racing. This had never happened before, me heart continuing to race after waking up from being unconscious. Anytime I passed out previously my heart rate would return to normal upon waking up, but not this time. My heart would not return to normal enough for me to gain enough strength to stand up and walk inside. Luckily, I finally got the attention of some people on the back porch of one of the dorms to come over and help get me inside. We eventually decided to call the EMT's because my pulse was so weak yet very rapid, but again the ending was the same. I decided not to go to the hospital since it was almost 2 hours away and due to financial reasons. The summer went on and I did not pass out again but I came very close a couple of times, but throughout the years I have learned when I need to lay down and let my heart relax.
So the summer ended and I flew home to visit for a month. I was still having frequent PVC's everyday and it was starting to scare me, but I hadn't the slightest clue what to do about it with no health insurance. I was attending a BoomBox concert and almost passed out a few times. I had to keep stepping away from the dance floor to have a seat and gulp down water because I kept thinking I was dehydrated, I guess I didn't know any better. During the four weeks I was home, I played Frisbee a few times and each time I nearly passed out, but each time I managed to stop just in time. My visit ended and I flew back out to Texas to grab my car, meet up with Jon and Adrian, and to begin our road trip out west to South Lake Tahoe.
After a few nights on the road we arrived in Tahoe in the early morning and spent the first night in a motel, The Vegabond. The second day we found an apartment and went to a restaurant to eat and fill out papers. We get back to the apartment so seal the deal, which we did, and so we begin to move in. About 30 min. into unpacking my car, maybe 1/4 of the way through, I started to get dizzy and my heart started to race. I thought I was going to pass out so I tried to run upstairs to lay down in my new room and rest on my pillow. I had to crawl up the last set of steps and into my room. That's when my heart went haywire and started to race faster than it had ever raced before, and this time I couldn't breath and I ended up throwing up my lunch. At that point the guys had already called for the ambulance. It took the EMT's about 15-20 min to arrive and at least another 10 to get to the hospital. I continued to gasp for air all the way to the hospital. Once we were there, the doctors kept trying different medicines to slow my heart but I knew they were going to have to shock me so I started to beg them to put me to sleep. They eventually did and they also had to shock me twice to get my heart on a normal rhythm. After I was stable they decided to transport me to the nearest cardiac hospital in Carson City, NV, which wan't that close. Now if it wasn't raining or windy I would have been flown to the hospital, but instead I slept in the ambulance the whole 45 minute drive. I stayed in Carson Tahoe hospital for three nights and had an array of tests done, but then was released so I could be seen by an electrophysiologist in Reno, which was about 30 minutes away.
That lead to just over a month's stay in reno with time in and out of the hospital. My longest stay in the hospital was 6 days, and there was no shower to be taken. I started my stay in reno as out-patient. I was going to have a heart ablation done and that was going to be the end of it. I was going to be all better, well that was the plan anyways. A heart ablation is where they put catheters in your groin and maneuver them all the way to your heart. Once there, they begin to race your heart to see where the electrical mishaps are. When they find the problematic areas they then kill them off with heat waves. So I'm awake for this entire process and what usually takes about an hour or two took 6 hours. Every time they killed off part of the heart which i felt, the heat in my chest is what i feel, another part of the heart would fire up and then another and another. They were never able to pinpoint just one area. The whole time I was awake, my heart was racing for hours, I felt the heat, and then ZAP. They shocked me. It was horrible pain that I could not control my reaction to. It curled up every muscle in my body and I was screaming and crying and eventually they put me to sleep, but I was wide awake when they first shocked me. So apparently they had to shock me again when they put me out. The next time I woke up it was over but I was sick to my stomach and threw up all over the operating room. It was a very rough day so to speak. But that began my 5 night 6 day stay. My heart was racing uncontrollably after that ablation, all day for the next two days until they were able to install a defibrillator inside of me. A defibrillator is the size of an average phone...it is about 3 inches long and about 1/2 and inch thick. And the first month, it hurts like hell. Every time you rise from a lying position it feels as if you have a 20 pound weight resting over your heart but its superglued there and when you get up it feels like its just pulling everything down. It doesn't feel good and it forced me to sleep on my back for little over two months. I did not like that. So after i was released from the hospital we waited two weeks before I was seen again. I ended up being allergic to the medicine so I switched medicines and got my staples out, 10 of them. I eventually was stable enough to fly back home.
So we flew home the day before thanksgiving, and got in about 1 in the morning. We had a lot of family over for Thanksgiving dinner and that whole day I could feel my heart race. My heart continued to race all week and one time when I was trying to go to bed it raced for 5 hours. So the morning after that long episode we decided to go to the ER. When I was in the ER my heart rate was 180 bpm and that is what it had been all week for hours each day. The doctors gave me some new medicine, and scheduled another ablation for a month later. When we went into the ablation, the doctor was so confident that he was going to kill off the problematic area, but instead he had the same problems as the doctors in Reno. Any time he killed off part of the heart another part would fire off and then another and he described it as cherry picking. So needless to say, it worked some, but overall it was not successful. And that pretty much leads me to where I am today.
Ever since the ablation in January, I've just been waiting patiently to visit the doctors up at John Hopkins. They will be conducting genetic tests on me to see if I do indeed have ARVD or not. I am very anxious to get the results of that test. If I do have ARVD, I have exhausted all treatments except a heart transplant. If I don't have ARVD then I remain a mystery and we will have many more tests to under go. My heart has raced on and off since the last ablation but for the most part I have been pretty stable. But at the same time I can't do much of anything or my heart will race. My medicine also exhausts me so even spending just an hour or two socializing with family can seem tedious. So in the meantime I've been staying busy with an array of projects such as painting, writing, reading, watching movies, organizing all of the family stuff, puzzles, sewing skirts, stumbling, finding music, doing crosswords, making jewelry, and whatever else I find interesting. The doctors are all still baffled and confused and I remain a mystery diagnosis so now I am on my way up to John Hopkins, April 18th. But that's it, that's pretty much the whole story from A to Z.
Any questions?
