I believe I left this story when I was being put into the helicopter.
So there I was, barely 13 years old, terrified about separating with both parents, not knowing what the hell was happening, and having the knowledge that I wouldn't see any of my family for four and a half hours.
With a kiss goodbye from my dad, and many people watching me be jerked into the helicopter, I panicked. I was completely fine with what was going on in my body, but not with the uncertainty that my mom would be allowed to tag along. I wanted her with me. After frequent demands pleading that my mom come with, she got on (later I found out that she was going to come the whole time, but they were asking her questions about something or other). So with me strapped in, and my mom getting buckled in, I reminded my mom that we wouldn't be having lunch out anytime soon today. With a "I'm sorry honey, I didn't realize this would happen," I knew that I wasn't going to eat for a VERY long time.
Since our city park is next to the lake and it was October, the ride was beautiful. All of the leaves were still on the trees with red, gold, orange hues, and I must say it looked wonderful. The gorgeous orange, red, gold leaves held my full attention unless I was called back by one of the men accompanying me and my mom to answer their questions. I didn't really care about their questions, I wanted to enjoy my first helicopter ride.
When we got to the hospital, I was taken to an emergency room where I was poked and prodded while watching Harry Potter. With my mom and I begging to let me eat, I was given a tiny ass apple juice box.
Talk about torture.
There was also still no word about what was going on with my heart, or at least the doctors weren't telling us. My mom was trying hard to be strong for me even though I wasn't the one freaking out (unless it was about eating. For some reason I become down right mean if I don't get to eat.) After a couple of hours of waiting, my uncle visiting, and more tests done, we finally found out what was going on in my heart.
I had Pericardial Effusion. I was one of seven children who have had it in a three-state region, and it could have potentially been deadly. Pericardial Effusion is where there is a hugely abnormal amount of fluid between the heart and the pericardium (sac surrounding the heart). There is a need for 2-3 tablespoons of fluid to help the heart move inside the sac; however, I had 20 ounces of fluid surrounding my heart in this sac. The pericardium doesn't expand very much either, so the dangers of squishing my heart was the reason for the all the pain in my chest. That and the fact that my heart was weighing down my lungs making it harder to breathe. The doctors told my mom and I that I was being scheduled for heart surgery since this would be the only way to get rid of all that fluid.
Hearing this, I rejoiced in the fact that I would get to eat. I wasn't having surgery today! I could eat!!! After getting the news about my condition, I was transfered to the 7th floor (the heart floor) and given a room to myself. My mom and I were reunited with my dad and my one of my sisters (the other was in college at the time without a car), and I quickly demanded sustenance from the nurse. It was around 11 o'clock pm at this time; she quickly told me that the kitchen was closed and had been for some time. I started crying like a little baby; I was finally given a tiny cup of chocolate ice cream, which was taken away from me after I ate only a half of the miniature cup. It didn't bother me so much since I was full, apparently my stomach shrunk throughout the day.
The next day I was told about the consequences of doing this operation and the repercussions for not doing the surgery. Obviously I decided to have the surgery, since heart surgery is in the title of this blog. My one demand was that I would be able to have my blanket with me when I went in to surgery. I had it the whole time during this fiasco, I might as well bring it with me there. Yes, I was very demanding in this hospital; however, I did say that I get very grouchy when people do not allow me to eat. And a stuffed animal or a blanket was allowed to surgery since I was in a children's hospital.
Later that day, I went into surgery with the knowledge that something would be cutting deep inside me to get to my heart. I was finally terrified.
After four or five hours of surgery, I was brought into the ICU place where I woke up a couple hours later to find flowers, stuffed animals, and my family were all there (only one could visit at a time though). I quickly fell back asleep.
I spent a week in that hospital, watching movies, playing games with visiting family and friends, playing bingo on the children's hospital network, and watching the amount of fluid run out of my chest into a tube where it fell into a measuring bucket thing. I was given three large meals each day after that surgery, letting me choose what I wanted to eat, so my recovery and my mood were improving with time.
I don't think I could ever forget any of these memories. Sometimes when I think about everything that happened, my chest starts to ache in remembrance. And if you're wondering about how my Pericardial Effusion was caused, we still don't know how it happened. But it has caused many repercussions, I now have had flares of Pericarditis (a smaller version of Pericardial Effusion) throughout these last seven years, and will for probably the next eight years. But who knows? I could stop having the flares way before that. Since time has progressed, the flares have become farther apart and lesser. I usually get a flare up maybe one a year now, and the way to treat it is so much easier since it is taking Prednisone for a month or so.
I live with the knowledge that I could get it again at anytime, and rarely talk about it unless someone asks. The reason? I don't think it is at all harder than what trials others go through. Like I said, just different.
Monday, October 31, 2011
Thursday, October 27, 2011
When I was 13, I had Heart Surgery
First of all I would like to say that my life experience is just that, mine. I also want to say before I tell my story that I do not believe that my story and life experience is harder than anyone else's, just different. I believe that every life has its difficulties and mine comes in the form of medical bills. Haha. Get it?
If you did not get my horrible joke it was supposed to be funny. Heart surgery is expensive, therefore I get medical bills. Hence the joke. Don't worry I have medical insurance that saved my life and my parents from going bankrupted. So, with all this said, here is my story.
When I was probably five days into being a new thirteen year old girl, I had to go to the hospital and get heart surgery. At the time, I did not believe I would have to have this done. I just thought of myself as a normal girl. Of course, I believe every child thinks that, but I am getting off topic. During the six months before I had the surgery, I would get this slight pain in my chest. It would come and go at random times, but the slight pain slowly grew to the point of not being able to run for very long or even to walk up the stairs without being exhausted.In the beginning, my mom and I thought that it was because I pulled a muscle from tubing or another extreme summer sport since I was so active.
As the pain grew, the more I felt that it was my time to go, and was hiding the extreme pain it caused me from my parents. However, my mom could start seeing the signs and realized that I was never sleeping on my back anymore due to the crushing pain on my lungs. Because of my medical history, she kept asking me if I wanted to go to the clinic to get myself looked at. I admit that I am a foolishly stubborn person and would freak out at the thought, so we wouldn't go. However, in October I started to feel the pain much more, and I was struggling to do the basic tasks while also hiding the fact that I was in agonizing pain. It started to bother me during my birthday party, and wouldn't stop. I remember missing the first day of Confirmation, and in the church I go to, you do not miss this day because it is very special. It was then that my mom demanded that I go to the clinic; I didn't even argue.
The next day, my mom was able to get an appointment at the clinic around noon. I was lying on my parents bed when she came in to tell me that it was time to go. As she was helping me put my socks and shoes on, I realized that I was starving. I was so hungry, and when I told my mom this, she said,
"Taylor, we're almost late for this appointment, would you mind if we went to the appointment first? I'll take you out to lunch afterwards, how about that?"
After accepting her offer, not only because it sounded amazing but because when I ever was sick from school, I could never leave the house other than medicinal reasons. A genius rule; I must say it kept me from skipping school and pretending to be sick a lot. Anyway, when we got to the appointment I did what everyone had to do at that age, get weighed and have my height measured. We waited the usual wait for the doctor or his assistant to come in. When I was checked by the assistant for my breaths, my heart beats, and my pulse, she seemed be having problems. First, when she checked my pulse, she had to do it three or four times before she could even hear it. Then, when she was listening to my heart apparently it was very muffled. Perplexed and uneasy, the assistant went to fetch the doctor.
During this time, I was very calm and centered, almost in a 'all you need is love' mood while my mom was a pile of stress sitting next to me, and my dad was oblivious in the waiting room.
The doctor came in, did ALL the same things that the assistant did, and muttered about medical things under his breath. Finally, he asked if it was okay if I could get a x-ray of my chest. After my x-rays were done, I could hear whispers outside my room, and my doctor demanding to get on the phone with someone. When he came into the examining room he asked us if we have a history of large hearts, and when our answers didn't seem to make him feel any better, he brought us out of the room to look at the x-rays taken of me.
When we saw them, he pointed to where my heart should be, and said I had no heart... just kidding. He actually told us that the black spot where the heart goes was abnormally large. Larger than any heart should be in a 13 year old. I remember standing there so still with my shoulders hunched over and listening to his words, almost as if I was in a daze. I remember him asking my mom if he could have me pee in a cup for testing, and get some blood work done. We quickly did that, and while my mom and I were waiting in the examining room we heard even more rushing around. My doctor came in with some nurses and put me in a wheelchair. I was pushed into the emergency room where I was given an oxygen mask, and had a I.V. put into me. The doctor was right outside the door yelling in a phone about a helicopter, and my mom was ash white.
During this whole time, I was seeing people freaking out, and running around like their heads cut off while shivering because the fall breeze from the large open door and my medical gown was too thin to keep it off me.
Suddenly, my dad was crouching in front of my wheelchair with tears running down his face telling me that he loved me so much and I that I was special. He told me that he would be right with me, but that he had to go collect my sister from the school or something.
I panicked. My dad had never cried in front of me other than at a funeral, so I concluded that the world was ending. When I saw the ambulance pull up to the door and people climbed with a gurney, it was decided, the world was WAS going to end. It was baffling to me when I realized that all this was going on because of me. Little ol' me.
Before we left in the ambulance, I was told that I would be transported to the park. I would at that point fly down to the twin cities in a helicopter. We drove the three blocks to the park, saw that the helicopter was already there and a bunch of people (family and friends - surprising since this all happened within an 2 hour time period).
After realizing that I would not go in the helicopter unless my mom came with me, my doctor got the pilot and medical people to let her come with me. Frankly, I started to freak out when they were not letting my mom come, but what 13 year old kid wouldn't?
And since this is a huge story, it is to be continued...
If you did not get my horrible joke it was supposed to be funny. Heart surgery is expensive, therefore I get medical bills. Hence the joke. Don't worry I have medical insurance that saved my life and my parents from going bankrupted. So, with all this said, here is my story.
When I was probably five days into being a new thirteen year old girl, I had to go to the hospital and get heart surgery. At the time, I did not believe I would have to have this done. I just thought of myself as a normal girl. Of course, I believe every child thinks that, but I am getting off topic. During the six months before I had the surgery, I would get this slight pain in my chest. It would come and go at random times, but the slight pain slowly grew to the point of not being able to run for very long or even to walk up the stairs without being exhausted.In the beginning, my mom and I thought that it was because I pulled a muscle from tubing or another extreme summer sport since I was so active.
As the pain grew, the more I felt that it was my time to go, and was hiding the extreme pain it caused me from my parents. However, my mom could start seeing the signs and realized that I was never sleeping on my back anymore due to the crushing pain on my lungs. Because of my medical history, she kept asking me if I wanted to go to the clinic to get myself looked at. I admit that I am a foolishly stubborn person and would freak out at the thought, so we wouldn't go. However, in October I started to feel the pain much more, and I was struggling to do the basic tasks while also hiding the fact that I was in agonizing pain. It started to bother me during my birthday party, and wouldn't stop. I remember missing the first day of Confirmation, and in the church I go to, you do not miss this day because it is very special. It was then that my mom demanded that I go to the clinic; I didn't even argue.
The next day, my mom was able to get an appointment at the clinic around noon. I was lying on my parents bed when she came in to tell me that it was time to go. As she was helping me put my socks and shoes on, I realized that I was starving. I was so hungry, and when I told my mom this, she said,
"Taylor, we're almost late for this appointment, would you mind if we went to the appointment first? I'll take you out to lunch afterwards, how about that?"
After accepting her offer, not only because it sounded amazing but because when I ever was sick from school, I could never leave the house other than medicinal reasons. A genius rule; I must say it kept me from skipping school and pretending to be sick a lot. Anyway, when we got to the appointment I did what everyone had to do at that age, get weighed and have my height measured. We waited the usual wait for the doctor or his assistant to come in. When I was checked by the assistant for my breaths, my heart beats, and my pulse, she seemed be having problems. First, when she checked my pulse, she had to do it three or four times before she could even hear it. Then, when she was listening to my heart apparently it was very muffled. Perplexed and uneasy, the assistant went to fetch the doctor.
During this time, I was very calm and centered, almost in a 'all you need is love' mood while my mom was a pile of stress sitting next to me, and my dad was oblivious in the waiting room.
The doctor came in, did ALL the same things that the assistant did, and muttered about medical things under his breath. Finally, he asked if it was okay if I could get a x-ray of my chest. After my x-rays were done, I could hear whispers outside my room, and my doctor demanding to get on the phone with someone. When he came into the examining room he asked us if we have a history of large hearts, and when our answers didn't seem to make him feel any better, he brought us out of the room to look at the x-rays taken of me.
When we saw them, he pointed to where my heart should be, and said I had no heart... just kidding. He actually told us that the black spot where the heart goes was abnormally large. Larger than any heart should be in a 13 year old. I remember standing there so still with my shoulders hunched over and listening to his words, almost as if I was in a daze. I remember him asking my mom if he could have me pee in a cup for testing, and get some blood work done. We quickly did that, and while my mom and I were waiting in the examining room we heard even more rushing around. My doctor came in with some nurses and put me in a wheelchair. I was pushed into the emergency room where I was given an oxygen mask, and had a I.V. put into me. The doctor was right outside the door yelling in a phone about a helicopter, and my mom was ash white.
During this whole time, I was seeing people freaking out, and running around like their heads cut off while shivering because the fall breeze from the large open door and my medical gown was too thin to keep it off me.
Suddenly, my dad was crouching in front of my wheelchair with tears running down his face telling me that he loved me so much and I that I was special. He told me that he would be right with me, but that he had to go collect my sister from the school or something.
I panicked. My dad had never cried in front of me other than at a funeral, so I concluded that the world was ending. When I saw the ambulance pull up to the door and people climbed with a gurney, it was decided, the world was WAS going to end. It was baffling to me when I realized that all this was going on because of me. Little ol' me.
Before we left in the ambulance, I was told that I would be transported to the park. I would at that point fly down to the twin cities in a helicopter. We drove the three blocks to the park, saw that the helicopter was already there and a bunch of people (family and friends - surprising since this all happened within an 2 hour time period).
After realizing that I would not go in the helicopter unless my mom came with me, my doctor got the pilot and medical people to let her come with me. Frankly, I started to freak out when they were not letting my mom come, but what 13 year old kid wouldn't?
And since this is a huge story, it is to be continued...
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