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Thursday, February 20, 2014

TEE Results

"How often do you guys do these tests?" I asked, curious of their level of experience.

"About twice a day." Answered the doctor on my left, who was beside the Cardio Tech as they prepared to perform a Transesophogael Echocardiogram. I felt at ease with that answer, and watched them set up around me with the portable equipment in this large nearly empty room. The Cathlab was a small place, that took me about thirty minutes of roaming the hospital to find. There were two rooms, one with a glass sliding door and multiple beds labeled 'recovery', and the large room I was in with the hospital bed in the center and it's own bathroom. In the corner sat my two best friends, Mike and Rose, who were soon escorted to a small waiting room while I was sedated. 

The nurse on my right had already placed an IV in my wrist and carried on casual conversation as she checked me in. She explained the procedure to me, and we began swiftly. I was asked to gargle a small cup of some of the worst liquid I've ever seen. It reminded me of motor oil with the thickness of syrup. The gargle was more of a gag and my eyes watered to the point of tears. Sedation was injected at a high dose and the roof began to move, but I was still awake. They stood around quietly waiting for me to fall asleep and the nurse placed a space holder in my mouth to keep my jaw open. More sedation was administered since I was difficult to knock out, and soon I was waking up with my friends beside me and the procedure done. It took about an hour for me to come out of the sedation and fight the nausea enough to use the bathroom and get dressed. The doctor came in and pulled the test up on the screen with a very matter of fact display of emotion. He pointed out a white mass and described it as a very mobile Myxoma of significant size. Most likely benign, he described how it was in the right atrium and showed a second smaller one on the aortic valve. The treatment would be surgery, and the possibilities were endless. Fear of the unknown crept over me again, and I found myself surprised that for the first time in six and a half years of being ill, they found something structural that was fixable and considered 'serious, not emergent' as the doctor worded it. This was a different doctor then my usual Cardiologist, but I knew I would be hearing from Dr. Lootens later to discuss these results and a course of action. I sat quietly and let the results flood into my brain and fill my thoughts as I felt like hurling from the drugs. I knew this was a turning point in my life, the beginning of yet another hill to hike up, another story to tell, another chapter in my book to live. My friends escorted me to the car in a haze, and as soon as the doors opened and the fresh air hit my face, the tears overfilled my eyes and streamed to touch the collar of my jacket. 

"Are you okay?" Mike asked, and they both put their arms around me. It had sunk in, how dangerous these tumors could be, the slight possibility they were cancerous, the knowledge of another surgery in my future, and how it would affect my entire life. How could I judge the situation though, not knowing what would come of it? I decided to go for the strong route and accepted the possibilities. The only way I could process the situation was to educate myself. I spent the rest of the afternoon on google, reading case reports and statistics. The final result of what I found was shocking. Turns out this type of tumor can release a special type of chemical responsible for inflammatory properties and autoimmune response. Could something removable like these Myxomas be the cause for my recurrent untreatable symptoms? It just might be, and that gave me hope. Another discovery was how rare right atrial Myxomas are, occurring in only 25% of Myxoma patients. Never mind that, heart tumors are rare in general. It was narrowed down to only 0.0016% of people having heart tumors, 75% of them being Myxomas, 25% in the right atrium, 15% leading to embolism from tumor fragments breaking off, and an even smaller amount of tumors occurring on the outside wall with multiple growths. The procedures performed for this type of Myxoma were extremely difficult, full of complications, often unsuccessful, and extremely specific. Some cases had to be opened up right down the middle, with tumor excision and valve replacement procedures. Others were accessed from arteries with sensitive equipment and risky maneuvers into the heart, trying not to release the tumor into other areas of the body. 

All of the information settled easily, and I only relaxed enough for my eyes to water a few times while deep in thought. The risks involved in such a procedure are serious. I need a team of specialists from Boston to evaluate the options, and I need to get my legal paperwork (will, power of attorney, and such) together in the next few weeks for safe measures. For now I wait until my Cardiologist consults with colleagues on where I should go for this procedure, and I have an appointment with him on Wednesday to discuss my next step (hopefully which will include having the tumors tested for lyme). Waiting is difficult, being patient when you know that the main symptom of what you have been diagnosed with is sudden death, is nearly impossible. It's scary, I'm young and want to live a long healthy life. I don't want more scars on my youthful body, more bed bound time post surgery, more worry about my well being in the hands of trained professionals that I don't know. It's easy for me to be overwhelmed when the thoughts enter my mind about what could happen, or what may not happen. I find comfort in hope, and hope in the possibility of a miraculous blessing like I have witnessed so often in my past. After witnessing my younger brother run over by a suburban on mother's day, and coming out of it basically untouched, how could I not have hope? After witnessing my father misdiagnosed, suffering a stroke for a month and encountering 2 brain surgeries with a less than 5% chance of survival, how could I not be optimistic? I will make it through this, and I'll just have to write a book because of how unusual my story has been. I will post more information on Wednesday when I know more about my future from the Cardiologist appointment.

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