Tubes hooked up all over the place going in and out of my body. Wires taped to my chest were connected to every machine, monitoring anything my body does. The thought creeps into my head, how did it come to this? Open heart surgery during my senior year of high school. How did constant leg cramps become this? Although I had those thoughts a lot, I saw how fortunate I was to get a chance to live a normal life again.
During my senior year at Barrington High School I had planned on one more great year of good times with friends before I would be off to college. I had struggled with a mysterious leg problem the year before. As I began my days walking around from class to class in September, I knew something was wrong. My legs would get cramped and stay that way for a while from even the slightest movements. It was as if they were on fire from the knee down. The pain was excruciating and the only thing that made it go away was rest at home. I could no longer ignore it and had to deal with it.
The first doctor I went to see was my old orthopedic doctor and he seemed as confused as I was about the whole thing. He believed that from what I was telling him it was one of two possibilities. I may have a nerve problem in both legs and the muscles were fine and healthy but the nerves were feeling pain that they shouldn't feel. His second thought was what he termed a compartment syndrome. After he ran the two tests, which, now looking back, were dangerous, we were sure it wasn't either of those. He worked me up on a treadmill to get my legs cramping in one test, and in the other he checked out the nerves in my leg all over with a bunch of large needles which was like getting stabbed repeatedly and which left my legs looking like two large pincushions. Neither test proved conclusive for either of his diagnoses.
We got a second opinion from another orthopedist as recommended by my general practitioner. In the end we came to the conclusion that both of these doctors were bad as well. The second orthopedist thought I may have shin splints and thought maybe it was because of wearing bad footwear, he was way off. My pediatrician was the doctor who I saw before we went to the general practitioner who recommended that we him. After this trip to the orthopedist and looking at blood tests and an MRI he believed that the problem was a type of arthritis, which did not seem to make sense. He wanted to biopsy my leg which is cutting open the leg and taking out a piece of tissue to run tests. He did another series of blood tests and more tests on my legs. Throughout the process my family and I double checked with my uncle, who is also a doctor. He told us that before we do this test we should go see a rheumatologist to confirm this diagnosis before we took the drastic step of having my leg cut open.
The wonderful rheumatologist finally ordered the right test. She started me on medication which actually started helping and then ordered that we do an angiogram to check the blood flow in my legs. To her it sounded like my legs were not getting enough blood and oxygen and also because of one scary situation that I had this summer where I had some sort of chest pains while I was playing Frisbee. I had been running a bit harder than I had in a long while and it felt like chest was going to explode. It felt like there was somebody inflating my ribcage until they were ready to burst open. This prompted her to order an echocardiogram, all the other doctors had failed to see this event as significant, but not Dr. A, and thank goodness for that. Right as thoughts of quitting began to creep in Dr. A got me going in the right direction.
When we were in the room having the echocardiogram done I looked at the screen, and it was immediately bad news to me just seeing the technician's reaction to what was going on. First he said "Well this test has been interesting thus far. Would you mind if I grabbed another machine with better technology and used that". I didn't mind at all but that was somewhat troubling. After this when I began to question a few things. "Is that my heart right there" I asked as I pointed to a large portion of the screen. He hesitated and said, "Um well not really your heart is this whole thing including these other surrounding areas. That, I'm not quite sure what that is" he said as he left to get a doctor. Instead it was a large tumor that was taking up most of the room inside of my heart. Finally when we had doctors from all over looking at the footage being in awe I knew then and there that I probably was going to need to have heart surgery. Then the next day was the angiogram which showed that blood flow was being blocked in both legs by something at around knee level which perfectly explained my cramps. I immediately put the puzzle pieces together and reasoned the mass in my heart seemed somewhat loosely attached that maybe parts of it were sent down into my leg and that was how this all began. Then to add drama, my new general practitioner, who wanted to biopsy came in and instead of explaining the situation chose to let us know that he was upset that we did not follow his diagnosis even though at this point he was clearly wrong and they would have taken out a piece of my leg for no good reason. I felt like exploding on him right there but I figured at this point it would do no good. After his little rant he even gave us bad information and said that it was cancerous which was false. Clearly my well being was of no concern. As my condition deteriorated it was clear that we had to do something soon or I would not be waking up tomorrow.
So it came down to an emergency open heart procedure a few days later to remove what ended up being a lemon sized non cancerous tumor in my heart. It was weird but I was never really all that worried about how It would go, In part because if I was strong it would help out those around me. Also all of my nurses were fantastic and we spent lots of the pre operation time talking about random things. They were astonished to get the chance to get to interact with somebody who was closer to their age and not the typical middle aged adult. I don't remember the surgery at all and I really barely remember falling asleep. Directly after became the hardest couple of days of my life. I woke up with a tube in my throat dying of thirst and my first movements provided excruciating rib pain. It hurt to simply breathe and they forced me to cough a lot which was as terrible stretching my arms out expanding my ribs Doing anything hurt but I was lucky because as my surgeon told me "At any moment if the tumor had decided to break off, and flow upwards to my head I may have had a be dead or suffering the effects of a stroke especially if I worked out more as my original orthopedist made me. The fact that seven pieces went into a relatively safe area in my legs when each time a piece broke there was a 25% chance of it going into my head was very lucky and made me feel like I had a new chance at life.
I was hooked up to everything, my ribs had literally been sawed in half the night before like they were lumber; it even hurt hitting the call button for more medication. The first few nights I was literally just sobbing because none of the pain medication was helping and I could not sleep or talk to anybody. I realized how precious every moment that we have is. Also the friends that I talked to got me through this ordeal by keeping my spirits up. The second day I was out when they came to visit was one of the best moments I had. They didn't do anything special just spend some time there hanging out which brought back some sense of normalcy. I owe them forever because at times directly after I really wanted to just stop and have a defeatist attitude but they got me through, especially Amanda. She was there for me more than any person could ever want and for that I am always in debt to her. She knew exactly what to say to get my mind of it all and onto something else and kept me in the loop. Anything I needed from visits to calls when I was in pain to hearing that she cried during my surgery because she cared made her a better friend than I have ever had and out of all this that was one of the few positives. Also as I said before my nurses were amazing. There were times when they would literally come on breaks and just come talk for a while. Cameron probably came 15 times or so and always brought snacks that were the polar opposite of the awful hospital food I was enjoying. However these relationships were not the only thing I gained from this experience. I learned to never take anything for granted anymore and to make sure to live every moment. I really want to make the most of this opportunity to live and take advantage of this second chance. That is the greatest wisdom that one can ever gain.