The Dysautonomia Insider

I just think that it is funny how on July 3rd, I woke up feeling fine. Really, I felt great. Just like another day. The whole day, I was sooo excited about going to practice for gymnastics, little did I know. I wasn’t going to be “normal” much longer.

5:27 on the evening of July 3rd was the end of my “normal teenage years”. I had absoloutely NO IDEA that my whole world (and my family and friends’ world) was about to come crashing down.

I went outside to feed some cows that we have and about five minutes into that, I started feeling “bad”. Well, I am not much of a complainer at all. Really. This being said, I just kinda played the “bad” feeling off and figured I would tell my mom (who is a nurse) about it after I got back inside. Well, little did I know this “bad” feeling wasn’t going to go away like I thought it would. Within seconds, I started getting slammed by all different symptoms (naseua, dizziness, headache, lightheaded, back pain, neck pain, general pain, weakness, a racing heart, and fatigue.. just to name a few). Despite feeling awful, I decided to still stick it out. Then, I started feeling like I was about to have a heartattack. Knowing that this was nothing to play with, I decided it was time to go tell my parents and have them take me to the ER. Little did I know, I wasn’t going to make it to the ER by myself.

I started trying to walk back up to our house. At the point where I reached the front door, I started feeling really bad. Mainly like I was going to throw up. Not wanting to throw up on the floor, I tried to get to the hall bathroom. Right as I got in the doorway to the hall bathroom, I remember seeing everything at a slant. Kind of like the world on its axis. I decided to memorize this feeling because I knew someting was about to happen and I wanted to be able to report how I felt to everyone. Last thing I remember was just feeling like I couldn’t go anymore. Like I was dying. Seriously. It was awful.

*From here on, my story will be based on what people have told me*

Thankfully, right when I collapsed my dad had just gotten behind me, so he was able to catch me. He carried me to the closest bedroom and laid me down on the bed. Instantly, they started checking for a pulse (which I didn’t have) and they checked my blood pressure. My blood pressure was CRAZY. One time it was 60/30 and the next it was 160/120 and these where taken maybe 30 seconds apart…. Maybe. I remember hearing my mom panicking and telling my brother to call 911. At this point, I wanted to go to the hospital sooooo bad that I kept thinking that I heard the sirens from the ambulance. Ha-Ha!

*My story from here on will be told from what I remember*

After a few hours in the ER, they “doctor” concluded that there was nothing wrong with me and that it was just “typical teenage girl problems”. As most of you can probably imagine, this did not go over to well with my parents (my mom is a nurse, my dad was just worried. He didn’t know what to think or do). Between the evening of July 3rd (when I first passed out) and the morning of July 4th, I passed out seven or eight more times. The day of July 4th, all I really did was rest…. and pass out. Finally, July 5th roled around. My mom decided that I needed to go to the doctor again, so we did.

The first doctor I saw was my general pediatricain (who is great). She definitely knew something was up when I wasn’t being my normal bubbly, happy self. She examined me (saw that my blood pressure was wayyy to highhh) and then decided that she thought maybe something was going on with my brain and I was having non-convulsive seizures. We all decided this was a pretty good answer, but we still wanted more.

After this first doctors appointment my mom and I went to lunch and I was feeling pretty good. After lunch, it was time for my second doctors appointment for the day. We where driving to the downtown medical center and about 20 minutes out from my doctors office, I started feeling really bad again. I told my mom that I thought I was going to pass out again, she told me just to lay the car seat back and she held my hand (squeezing peoples hand is the only way that I can respond to yes/no type questions only). I did pass out, but only for about 15 minutes or so (which is good for me). I woke up right when we where pulling up to the doctors office. I was able to walk inside (barely, but I didn’t want a wheelchair). Once we got up to my cardiologist my favorite nurse Scott took my vitals. They were CRAZYY. My blood pressure was almost 200/140 and my pulse was around 180 or 190 (can’t really remember). I waited just a few minutes for my cardiologist to come barreling through the door. I have a few people that follow my blog that know her/see her as a patient and I am sure that they will vouch for me when I say she is way over the top, BUT there is a method to her crazy madness..

It took her only seconds to decide that we didn’t know what we where messing with, but she knew it was not something to play with anymore (she had been treating me for hypertension for about 3 months in advance, hypertension was related to the Dysautonomia). She instantly started barking orders to everybody under her and started calling all of the chairs to almost every medical board you can think of. She was bound and determined to find out what was wrong with me. By about 6:00 that evening I was laying in a hospital bed at Children’s Memorial Hermann Hospital in the Texas Medical Center in Houston, Texas (it is only about an hour away from my house).

I finally got situated and my nurse came in to do my IV…. this was an EPIC FAILLL!!! They blew my veins in BOTH arms before they finally got a good one on the top of my hand. That night, I just tried to relax and not think about what was going on. I was scared to death. I remember watching gymnastics on the TV and all I was all good until a few minutes when all I could think about was “Will I ever be able to do gymnastics again?”. It was crazy.

The next morning, I saw LOTS of doctors, some being from my team that treated my previous hypertension, most being new doctors that I haven’t met before. They were all very nice though. We decided that since it was Friday, we were going to wait to do the tests they wanted to run until Monday. It was nice to just be able to relax and mentally prepare myself for what I was about to have to go through and experience.

My parents alternated staying nights with me and I had a ton of visitors to keep me company during the day. Sometimes I just wanted to push everybody out though! It was weird having all of those people there because they were worried about me. It was different, not only different, but scary. Scary to know that I was so sick that all of these people wanted to make sure that they saw me (not knowing what was going to happen next).

On nights that my Daddy stayed with me, he went down to the cafeteria and got me my favorite ice cream, chocolate chip cookie dough… He’s the greatest! Every morning my mom or dad (whoever didn’t stay with me that night) would bring me chick fil a for breakfast… I LOVE CHICK FIL A!!

Finally, Monday rolled around. They performed some of the test they wanted to do, after they all came back negative, we were all just kind of sitting around waiting for an answer. I remember always hearing the nurses and doctors talking about me in the hall and how crazy my case was. I think I was definitely memorable for everyone.

After about a week of being in the hospital, my cardiologist and neurologist came in and they both decided that they thought I had this rare form of Autonomic Dysfunction called “Dysautonomia”. They told me that they were going to bring in a doctor to perform a test called a “Tilt Table Test”. At this point, I was so tired of test, but everyone was convinced that this was the answer, so I gave it a shot.

Tuesday Morning (Almost two weeks from when I was first admitted to the ICU at Children’s Memorial Hermann), they got me from my room and took me down to the basement level of the hospital for the test. I met the doctor that was going to be performing the test, and I was a little nervous, yet a little excited to be finding an answer. They hooked me up to all of the monitors and tilted the table up. Within 1 minute my symptoms began to come back again. Within 5 minutes I was crying and was ready to be layed back down flat. The doctor pushed me to keep going. A few minutes later, I passed out and my heart stopped beating. That was the last thing that I remember. I didn’t think I was going to wake up. Can you imagine how scary that is? A 15 year old girl and I thought my life was over at that moment.

Thankfully, it wasn’t. They were able to give me rushed IV Fluids and I came back around (which is the trick for treating Dysautonomia). After the doctor explained everything to me and my parents, they let me go back to my room. I felt so bad. I probably got back to my room around 10:00am and I slept until 6:00 that night. Turns out my heart rate almost rose to 200… that is why I was so tired and my blood pressure dropped to 50/30.

After my test, I stayed in the ICU for about another week trying to get medicine regimens settled out and all that good stuff. Finally I got to go home, but under close watch. It’s safe to say that it was a pretty crazy time in my life.

Right now, I am really tired and don’t feel very good, so I am going to end this post here for now. I am planning on writing a My Story Part Two, so stay tuned for that! J

Love you guys and best wishes!

Shelby

~ by shelbyllloewe on January 31, 2013.

Posted in Uncategorized
Tags: appointments, Cure for Dysautonomia, Doctors, Dysautonomia, faith, god, hope, LIFE, love, Postural orthostatic tachycardia syndrome, pots, strength, Support, Teen Years