Pathology Report

Wednesday was the day everything changed. I had been home for a few days, struggling with symptoms like stomach/shoulder pain, nausea, and a cough, and decided to attempt my second walk outside of the house. I asked the five year old child my mother was babysitting if she wanted to go with me. it was a great spring day, slightly windy but refreshing as we made our way along the paved street I live on. I estimate from my house to the stop sign is a small hill that runs a little more than an eighth of a mile. From my door step to the stop sign and back is at least a quarter of a mile, I did not plan to walk that far. With the energetic girl bouncing beside me I suggested we 'search for bunnies' and in all her excitement we trudged to the end of the road. I took a break for a few moments here and there and felt tired, but did not feel dizzy or faint so I continued. When we returned to the house I was so proud of myself for embracing the distance and good weather and pushing myself to a higher standard. Immediately upon sitting down I felt sickly, with heart palpitations, pain, and fatigue. I knew I had walked too far for my second walk. My heart rate was checked and landed at 120, which is not preferred but also not terrible. I ate something, got my medicine in me for pain, and relaxed on the couch for the next few hours.

When the phone rang and read Dartmouth I knew it must have been my surgeon with the pathology results. He had told us, while I was still hospitalized after surgery, that the mass removed looked clot-like, nothing he had seen before. He said it was bigger than they thought, golf ball sized and hardened to the point where surgical removal would have been the only choice. He also said that he was glad we did not take the watchful approach and wait to see what happened with the believed Myxoma. I opted for the surgery right away due to medical insurance reasons, but it ended up being a blessing in disguise because the mass 'did not need to be much bigger to completely block blood flow' he said. If it broke off I would have been a sudden death case where autopsy would be the only answer to my cause of death. Over the phone he confirmed his previous suspicions. A large and hardened clot, also known as a thrombosis, was removed from my right atrium with no explanation for how it organized itself on the wall inside of the heart, or how long it had been collecting and growing in size. The report calls it a mural thrombus meaning clot attached to the heart, and describes it with muscle fibers and tissue encapsulating the hardened structure. The best idea for a cause was the tip of the port catheter that sat right beside the mass in my right atrium. Never had my surgeon seen this before, and still we are not sure of the cause. The surgeon recommended that once I am fully recovered we test for blood disorders and clotting disorders that could be a more genetic explanation. The bacterial and fungal cultures were all negative, and I became quite the mystery to many in the hospital who do not see young girls in the cardiac ward for open heart surgery often. Later on, a nurse informed me that in her 17 years of working in the cardiac wing of Dartmouth she has only ever seen two patients for cardiac tumor removal, and never one for my mysterious diagnosis. I was lucky to be alive, that in the month up to surgery the blockage did not release and reek havoc on my body. The possibility of the port causing all the pain with the surgery, put me in an anxious spiral, and immediately after hanging up the phone I got quiet. I was frustrated for this possibility, and I wanted nothing more than for the port to be removed immediately. "This is coming out tomorrow, if it can" I cried to my mother. Yet again everything I had been through wrapped right back around to Tick Borne Infections. My mind swelled with these realizations and my heart felt as if it could pop. Little did I know, that terrible feeling that developed was something much worse in the making, and within a few minutes my world would turn upside down.

Open Heart Surgery, ICU Recovery

It's called open heart surgery. Specifically it was an intra cardiac tumor removal by route of sternal incision.  Since that is too technical, and people look at you funny when you respond with that as an answer to their simple question, they stick with a traditional approach, "I had open heart surgery."

Those words would not ring the same in my ears after this April fool's day in 2014. I knew this the night before the surgery, as I scrubbed down with antibacterial soap and lined my stuff up at the door. This was a telling moment for me, I would never again look in the mirror and see a scar free surface. The small white marks from previous laparoscopic procedures were about to be erased with the distraction of a morbid crease down the center of my body. I stared in the mirror for a long time, just processing the sight. I was mentally preparing myself for the hours, days, weeks, even months ahead. I knew that night was the end of something, maybe a sort of innocence or an unknown territory. Something was reaching a conclusion, and the fear was creeping over me.

I had to leave the house at around three in the morning so I spent the night in a weird mood, opting not to give myself the opportunity to lie in bed worrying and instead to curl up on the couch with someone who saw me for more than my future of pain and struggle. We talked for hours and kept my mind busy with our small conversations. He took pictures of me laughing beside him and reminded me that all was going to be okay. As much as I wanted to believe it, I wasn't so sure that it would be okay. What if it was not okay, and I was not prepared enough, or did not tell someone I loved them enough? What then? I couldn't help but let the thoughts creep around my brain. I crawled into the back of my mother's red SUV and the hour and a half trip began. Within minutes I was overwhelmed with a solemn feeling, and the tears streamed down my face. "I feel like you're driving me to my death" I cried as my parent's heart broke in the front seat. Shortly after the words left my mouth I was lulled to sleep and did not wake up until we reached the hospital parking garage close to five A.M.

When I stirred awake I felt terrible. The lack of sleep, stress, and anxiety left me wanting to just curl up in a corner and vomit. The last thing I could think about was worrying further about the inevitable situation I was walking towards. The rest of the morning moved pretty quickly, as we checked in and immediately I was given a room to change and wait for surgery. The nurses bustled to and fro, asking a million questions to check me in and placing an IV in my left arm. Thinking back on it now, I actually don't remember being fearful at that point of the preparation. I met the people responsible for my life, took a final picture with my mother, and was quickly swept to saying goodbye. I meant it when I told my parent's goodbye and that I loved them. I was at peace with the situation, but I saw no light at the end of the tunnel. I thought that was it. A long seven years of Lyme suffering and medical mystery to be put to death by the irony of my case. I had always said 'Out of all my problems, I am thankful that at least my heart is okay!' and here I was facing the largest road bump in my trip through life thus far, being cut down the middle and spread like a sub roll for this operation. As grueling as it sounds, you must understand that the war going on emotionally inside me was much deeper. I was comforted by my faith, and I knew God had purpose and would see me through. I was worried for not my own well being, but the friends and family around me that needed me to make it through okay. I was encouraged by the possibility of an opportunity to experience something that might help me better support someone in my future. All these mixed emotions that I could hardly process, and the fear of the unknown left me numb.

They rolled the bed down a hallway and into a room full of people, shiny silver tools, equipment, and nothing I'd ever seen before. Technicians picked through buckets of stainless steel scissors and clamps on a platform straight ahead without turning around, and I became aware of the sedative not working enough to leave me uncaring. The blue sterile field I slid my own body onto was quickly surrounded by foggy faces who covered me in stickers, and placed cool patches across my center back and front as I lowered myself flat onto the table. I began to feel less scared, it was in full swing and there was no going back now. Before long I drifted to a point where I vaguely remember being asked where I went to school, and then the world faded from my senses.

The next 48 hours are a mixture of foggy memories and traumatizing moments. I did not care much for my surroundings, and I suffered through ICU with severe nausea and pain. I remember fits of throwing up, maybe four different times and the IV Zofran not being enough to stop the reaction. I remember bleeding from my canulated leg incision where the heart and lung bypass machine was run into my major vein. I didn't notice much as nurses tackled me to apply pressure and a brick of sand to the leg to stop the hemorrhage. Even two weeks later I still have a large bruise called a hematoma covering my entire thigh from that one wound.

Right thigh, hematoma, before it got worse!

I begin to remember my experiences on day two of post surgery life. I truly do believe this is for the best, because I have a feeling that the ICU stay after the four hour surgery and day one of recovery were the worst time in my life. The body tends to block out trauma from our memories, in an amazing phenomena not yet fully understood by psychology. All I know is it was certainly on my side through that part of the surgery. Also on my side, the hands of the surgeon and team that got me through that surgery. I may not have realized it immediately, but I was alive and I would appreciate that quality so much more from then on out.

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.

Echocardiogram Results and Transesophogeal Echocardiogram

An Echocardiogram is a very interesting test. I watched in amazement as the technician placed the gooey ultrasound probe to my ribs, and my beating heart appeared on the screen. She searched around the top of the heart and aorta, exploring every nook and cranny, snapping pictures along the way. I asked more about her schooling and career and became increasingly intrigued by the possibility that I could also see myself in the field. She picked up the probe and covered it with blue jelly, then pressed it along the bottom of my rib cage, letting the ultrasound waves travel upwards into my heart and back again to display the picture. immediately she paused in this new position, and stared. Shifting a few times she asked about my port.

"That's just a regular port, like ones they give for cancer, right?"

"Yeah, a power port", I responded as concern grew inside me. I could see her face change from monotonous with the early morning routine of seeing yet another heart pumping in my small chest cavity, to concentrated. I knew she was questioning something, and the conversation from before withered. Her eyes peered straight into the dark clouds in the screen.

"I have to double check something with Dr. Lootens, and I'll be right back. You can get dressed now" She left the room in a hurry and I knew she was trying not to worry me. I had seen a million ultrasounds at this point, and knew she noticed something. Assuming it was just the tip of the port, dangling in my Aorta right above the heart, I changed out of the hospital Johnny and into warm clothes. She retrieved me and asked me to wait in the waiting room while she grabbed the doctor for a few more minutes. So I sat down, and stared at my hands in my lap. Five, ten, fifteen, then twenty minutes passed. Eventually somewhere past the lapse of time the Cardiologist's head popped through the door and he sat down beside me.

"I don't want you to worry, Elaina, but we did find what looks to a Myxoma in your heart. Ultrasounds work through about seven layers of tissues and bones, and are not the clearest picture, so it could either be a Myxoma or natural tissues. To see it closer we would want to ultrasound you closer to the heart with a Transesophogeal Echo-cardiogram that goes on a cable down your throat while you are sedated."

I listened intently, thinking an array of worries from 'Is this a normal occurrence', to 'should I be worried', to 'wow, they can do an ultrasound from inside? Cool'. All my thoughts circled and thinking thoroughly I wanted to double check one thing.

"Are you sure what was seen is not port related, maybe something on the tip of the port or the tip itself in the ultrasound?" I asked, wearily.

"I believe, if this is what I think it is, that it's something that has been there for awhile." He paused, as if thinking of his next answer. "I will be asking around to get opinions from other doctor's today, and possibly performing the Trans-Echo to get a better look at deciding a course of action to take. Is that a number we can reach you on?" He pointed to the cell phone clenched firmly in my fist.
Nodding my head I loosened my grip and began to gather my things. I bid a farewell of sincerity, thanking the Lord that I trusted this physician. On my way to my car I thought of what this meant, and called my mother to research what the word meant, Myxoma.

Turns out, a Myxoma is a slow growing tumor inside of the heart. Not cancerous, being that the tumor cells can begin there at birth and slowly grow to being large enough to block blood flow and cause many additional symptoms, sometimes ending in sudden death. This is not to be of concern, seeing that I have the introspection enough to know I recognized symptoms early enough to possibly catch this in time. Treatment is surgery to remove the tumorous tissue and cells, and biopsy to make sure it is benign. I go in Wednesday for the Ultrasound surgery, where I will be sedated and have a probe on a cable lowered through my throat to get a close up view of my heart from the inside. We will reassess after that procedure and the results of the Holter Monitor on a decision of what the problem actually is, and make a future plan at that point. Like the specialist said, it could still be nothing. At least I know my heart still beats strong for Valentine's Day.