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Saturday, April 19, 2014

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.

Tuesday, April 15, 2014

Returning Home

I was sent home on Day 4, a beautiful Saturday where I fought discomfort and worsening nausea as the day continued. I finally ate a good meal when I got home, and relaxed in my dad's armchair as I was visited by my friend Rose for a short bit, and then my boyfriend that evening. Little did I know my situation would go from bad to worse. I spent my first night home in excruciating pain and vomiting too much to take more pain medicine. I went twelve hours without anything in my system to help the pain, throwing up, unable to relax, unable to lay flat, and begging my mother to take me back to the hospital. I just wished something would make it stop, or at least make it manageable. I knew in that moment that I shouldn't have stretched the truth earlier that day. When I was asked if I had been eating well, how my pain was, if I was ready to go home, and I answered that everything was fine, I really meant 'It's all terrible but I'd rather be miserable in my own home than in a hospital. This was not however how that worked out. Instead I was sent home early, crippled with pain and nausea, and experienced one of the worst nights I can remember. All that wishful thinking turned into a nightmare that I struggled through in agony.
Me after surgery, first meal

Sunday was the day we began to catch up to the pain. I made the decision to not try the Oxycodone, that it was just too much nausea for me to gain anything from taking it, and I'd rather be in pain. Instead I tried taking Ibuprofen and Tylenol only, around the clock. I forced myself to eat before the pain medicine hit an empty stomach, and took Zofran constantly. By Monday I had the nausea under control, and spoke to the surgeon's Physician Assistant about my concerns. I told her I refused to take narcotics, and she switched the Ibuprofen to a stronger anti inflammatory called Naxoproxen. That seemed to help, and instead of the dose on the bottle saying to take it every twelve hours we did it every eight hours. Once that was controlled I informed Jamie that I could not lay down flat, my shoulder blades and upper stomach just hurt too much. I also had developed a cough, sharp upper left rib pain near my heart, and the feeling that my rib cage was cracking constantly. I was advised that it all was normal, to keep forcing myself to take deep breaths and take some GasX for the stomach pain. Most patients prefer sleeping in a recliner after heart surgery anyways, she said, so it was no surprise. I did not realize at this point that some of those symptoms were not typical post surgery aches. I would find that out Wednesday evening.
Get well flowers from Robbie

My days home consisted of round the clock medications, force feeding myself as I grew an appetite, trying to build up to a bigger walk, and constructing a better sleeping plan through all my discomfort. I struggled to keep my cats from jumping up on my chest, like they love to do, and keeping myself comfortable. Refusing narcotics seemed easy after what I had been through the entire week of the surgery with the throwing up. There is nothing worse than heaving after your rib cage has been broken, other than your entire rib cage being broken of course. One important landmark of being home was figuring out how to move around, which I did with the heart pillow from the hospital and propping myself up with a million pillows everywhere I went. I was supposed to start out slow with walks and increase a few minutes each day.  My first walk made me realize how much my heart was altered. Where I used to run three miles a day, I was winded by slowly inching myself thirty feet. I could not travel alone, I could not easily move, and I was saddened by the setbacks to my physical fitness. My legs had swollen from the thirty pounds of water weight I put on, to the point where bending my toes was uncomfortable, and the skin felt like it was ripping when I moved. I kept hope that in two weeks I would progress as predicted, losing most of the fluid retention in my body, and gaining up to a comfortable thirty minute walk daily. I knew I would improve if I kept positive and reminded myself that there must be a recovery period after such a severe setback. Plus, I had so many people praying for me all over the map that it was impossible for me to not improve eventually. It would take time to get back to where I was, but it was going to feel so good when I reached my peak athletic performance level and could look back on the mountains I had to climb to get there. Nothing worth having comes easily.

Monday, April 14, 2014

Recovery Day 2, 3, 4

The moment I remember first was telling my mother that it was okay for her to leave. I wanted her to be able to go to the place her and my father were staying down the road, and grab some sleep. The place is David's House, a pediatric housing unit for parents in tough situations who need a bed and a hot shower close to the hospital, while their children are in-patient at Dartmouth Hitchcock Medical Center. She left the arm chair she had been sleeping in and went to catch a nap in the twin sized bed at David's House while I was stable. The vomiting had stopped, my pain was more controlled, and I wanted nothing more than for her to be comfortable. After a few hours, I was awakened to the information that they wanted to pull the large chest tubes that morning. The chest tubes were about half an inch in diameter, running in two incisions above my belly button from the center of my torso through to my lungs on each side. I knew it was going to be a painful experience for those to be removed, and I told my mother I wanted her to see me smile once more before the procedure. She rushed over just in time for the clear snakes to be pulled from my body and the remaining holes tied closed. It was like something from a horror story, the pain of my insides being ripped and my skin being pinched closed with thread, still haunts me. That was my first clear memory post surgery. I woke right up from the adrenaline of that pain and can truly say it was a traumatic experience.

Before Surgery
The rest of that day is washed from my memory. At some point I was transported from Cardiac ICU to the Intermediate Cardiac Care Unit for the rest of my stay.  To understand the entirety of the procedure I want to review the stress my body was put through. First, there was a heart and lung bypass machine that ran my body while in surgery, it entered in my neck as an IV, and in my major vein running from my groin and cycled all my blood and oxygen in a closed system. Second, there was the chest tubes described above, one for each side of my chest to drain inflammation from the chest cavity through the procedure and recovery. Third, there were two additional incisions near the chest tubes that contained pacing wires (an external pace maker basically, to control the rhythm of my heart if need be after surgery). Fourth, there were arterial IV's that measured blood pressure in each of my wrists, causing extreme bruising and pain in the joints during recovery. Fifth, there was a sternal incision down the center of my body where everything was separated including my sternum, muscles, organs, and of course the skin to allow for access to the right side of the heart. The surgeon did a great job keeping scarring in mind, and the skin incision is only 4.5 inches long (he worked in a larger area underneath the skin, and the skin is glued together to reduce the scar). When it heals you wont even notice the scar that much. The bone was divided down the center and instead of wiring it back together like traditional open heart surgery, I was stuck back together with permanent stitches that will not dissolve but also not be obvious under my thin torso. Now that you are fully aware of the immediate and obvious trauma, add on the thirty pounds of fluid absorbed through the procedure, the seven scars I will always have, the emotional trauma, the general pain, the sore throat from the breathing tube, and the 2-3 months recovery to heal the sternum. This is the most invasive surgery possible, every system of the body is affected (from respiratory, circulatory, skeletal, musculatory, and lymphatic systems to the digestive/urinary tract, and even the nervous system), and there is constant moving from breathing and your heart beating through your entire recovery.

After Surgery

On day three I still fought with nausea from the painkillers, and constant pain while breathing. I remembered what I was told before the surgery, that patients "Don't usually complain of pain while breathing after surgery", and I wished it was true.  I switched from PCA (as needed, you push a button for a dose) Fentanyl to oral Oxycodone. Nothing was working and all of it made me sick. The nausea medicine did not cut it, and I was barely able to eat a few bites of jello or drink a protein shake with medicine doses. One evening while lowering myself into the arm chair I chose to sleep in, I felt a rib in my upper left chest slip out of place with a pop. This slipped rib caused me pain all throughout recovery, popping in and out of place and affecting my comfort level while trying to rest.  Those few days were some of the most painful, uncomfortable, nauseas days I've ever had. I was given a pillow in the shape of a heart with a real heart pictured on the front to hug while I adjusted (keeping me from pushing with my upper body and ruining my internal sutures). Pillow in hand, I was pushed by physical therapy to start walking immediately. Uncomfortably attached to a urinary catheter I pushed myself up and down the hall. One evening (I believe day 3), the catheter was pulled, which also stopped the diuretic medication I was on to reduce fluid retention in my body. They started me back on my confusing IV treatment regimen, and even used my port for blood draws (much to my surprise, usually they won't touch a medi-port if they did not install it). I was started on Metoprolol, a beta blocker medication to reduce heart rate and blood pressure through recovery. The dose is started small and increased over time while your body takes three or four days to adjust to the new levels. At first it can make you feel really tired and abnormal, but once you adjust it reduces your anxiety levels, helps you sleep, and is better for your recovering tissue. The changes my body experienced kept me busy for those few days while the pathology department looked over my clotted mass to decipher the 'myxoma' and its origins. Up until this point, we were told it was a right atrial myxoma, a non-cancerous collection of slow growing tissue inside the heart. Usually these masses are attached by a stock, need removal at some point (or are found in autopsy), and there is no explanation to their cause. We wouldn't know otherwise until seven days after surgery. See 'Pathology Results' post for more info.

Artery IV spots, painful bruising
After the chest tubes and catheter were removed, the pacing wires were pulled out. That was not nearly as painful as the chest tubes, but it was the same sort of pulling, sliding, grinding, uncomfortable feeling. It ached afterwards for a short time, but there was no stitches to tighten or worry with on the skin, which helped. I had a new IV put in my other arm which only lasted for a day, but did not leak around the entry site or sting. One of the best things I experienced was before being dismissed from the hospital I got to use special adhesive remover pads, and get all the gunk off of me from the tapes and stickers. That shower was great, and that night I had a visit from my best friend Rose and my boyfriend Robbie. It was great to have different faces in the room and be in a clean state of mind while they sat with me. My father had returned home after the two night stay at David's house, and my mom stayed in the bed in my room. The bed (which I swear was broken) adjusted every 20 seconds on the dot, even if you were not in it, and the constant movement was too painful for me to relax with. I chose instead to rest in the armchair surrounded by pillows and reclining my swollen legs and feet on the unstable footrest (usually we supported the footrest with another plastic chair to keep it from suddenly falling closed). It's sad when a surgery patient chooses the chair instead of the bed because the bed is just that annoying. We were told most heart surgery patients choose the reclined position instead of laying flat for the first two weeks. I think the reason is because the bed's are worse than the chairs. Plus when you are fighting nausea, the last thing you want is to lay down flat.
New IV with a smiley!

Day three is when I began to stretch how good I was feeling (after the medicine adjustments, tubes being removed, an uneasy shower, restless nights, and still struggling). I just wanted to go home and be in my own bed, instead of feeling couped up at a hospital. I received my wish, and with hopes to a night of sleep without being poked or prodded awake every hour, I left on day 4 for the bumpy trip home, and some KFC.

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.

Thursday, March 27, 2014

Getting My Ducks In A Row

I've had a lot of time to think lately. I spent the first week of my three week wait figuring out logistics of my recovery period. I had to let my friends, family, coworkers, and teachers know about the upcoming surgery to make sure any accommodations I need will be ready. I managed to get one of my two night classes to administer a written essay as the final, before my surgery so my last day in that class will be tonight. The other class I am doing the midterm on Friday for, and will be doing the final (which was a write up anyways) in the series of five essays on U.S. History and mailing it in to the school as soon as I've recovered enough to complete the assignment. These were both extremely understandable options as I know I will be missing about half the semester and still need to learn something from these courses to earn my diploma. The graduation will most likely be around June 6th, and I prepare for that moment mentally by picturing all the accomplishments I have done over the years. This is just another small road bump in the course of finishing my High School Career. The next thing I figured out was my work position. Being that I was around the many germs going around this flu season, I received a doctor's note saying I could not work the rest of the season at the ski resort like I wished I could. I attended my last day of work two weeks ago now, and have been thinking of how drastically my employment has been affected by Lyme over the years. Instead of throwing in the towel, I fought my hardest to attend a few short shifts a week to get me out and about, with special accommodations, always ending the season early for pushing myself too much and worsening my condition. I was convinced by everyone I know that because my employment was so drastically affected, I should apply for state help. I went through the hours and hours of applying for disability, SSI, food stamps, APTD, and every other program I could find. Already within just two weeks I had my SSI, and DHHS interviews where I was denied for pretty much every possible thing. I will know within 6 months if I get any help with disability, SSI for children of Disabled, or APTD. Apparently there is another form of state medicaid passed through the senate this week, that is waiting for the Governor's signature. That will open up the doorway for medical coverage for me, which is a huge deal. The next duck I had to line up was preparation with Planet Fitness. I thought I was going to be paying a few months for a membership I couldn't afford, yet I asked if there was anything they could do. With a simple doctors note they were able to suspend the membership from April until June so I can have that stress reduced. In all the planning and over thinking I've done I forgot the most important step. I forgot to remember how important it is to not plan or over think. Stressing myself out before a major surgery will only kill my immune system and affect my recovery time. I have stopped work, my last class is tomorrow, I don't plan to leave the house for more than my last trip to see the horses I've been working with to keep me sane. I am prepared for the Tuesday procedure, the extensive scrub the night before, the two hour trip to the hospital, the hours of prepping and the months of recovery. I am terrified, but I am ready.

Thursday, March 13, 2014

Preparing for Open Heart Surgery

Last I informed everyone, I had two Myxoma type heart masses discovered on my TEE. A lot has happened since I felt well enough to get on here and update everyone. My day's changed vastly, and I rode the roller coaster of emotions with stride. First, I had to wait a week to meet with my Cardiologist again. It was a long wait, but after a week I finally got to see the picture of the tumor in the right atrium again, and was told I was being sent to Dartmouth Hitchcock Medical Center in Lebanon, NH. My trusted doctor referred me to a Cardio Thoracic Surgeon named Dr. Discipio who has many years experience with pediatric patients in Boston Children's Hospital and now practices at DHMC. Soon we had an appointment with him, and the hour a half drive up there in a snow storm felt like forever. When we found our way into the office we were swept right into an examining room where we waited for the nurse to decipher my medications list. He peeked his head in before she could finish and shooed her away so we could begin our appointment. My mother's heart rate raised to match mine as he began the appointment discussing how some right atrial Myxomas are not removed and people can walk around with them for a long time without a problem. We looked at each other with confusion. Up until this point I had been told these tumors were serious, dangerous, risky, and required surgery. Now he was throwing in a curve ball I was not prepared for, neither did I understand. He then proceeded to lead to the cold hard facts, that this would require surgery whether it be now or later, and that they do grow to affect the flaps and become a blockage of blood flow. He explained that the surgery is open heart surgery, and both possible tumors were going to be removed and sent to pathology to discover what they are. "The tissue is the issue" is what I was told continuously. Once the tissue is removed they will know what it is, for now it's just troublesome tissue. I was not reassured whether this would resolve my symptoms, any of them, and the aftermath of surgery is traumatic. Thankfully, because of my age and health, I should bounce back quickly, but the prognosis is that I will be in ICU for 24-48 hours after surgery and a total hospital stay of about 5-7 days before returning home for the first month of recovery that will be a struggle. Total recovery prediction is three months before I'm back to doing things more normal, and constant heart observation over the next few years as I am put on a low heart rate medication and checked for recurring tumors. It certainly was not the news I wanted, I spent many days in a haze, crying occasionally and struggling with silencing depression. I stared at a blank spot for minutes at a time, just sinking into a realm of processing what my future looked like. I could see the large scar running down the front of my body, the steel wires holding my breast bone together, the tubes hanging from every orifice of my body in ICU post op. I saw the pain, the struggling, the discomfort, the complications, the risk, the literal heartache. Fear overwhelmed me and all I found myself doing was praying. I am comforted in the fact that I know what is ahead of me, I know how loved I am, and I have the best doctor of all aiding me from the heavens. I still have rough moments where for a few seconds the fear sinks in and suffocates my soul, quickly diminished by the comforting peace that comes with being a believer in Jesus Christ. When people ask me why I believe I answer with a simple idea, "How could I not?"

I ask everyone for prayer as the day nears. April first, fool's day, and boy do I hope not to be fooled by anything. I will not know the time until the day before the procedure, but I prepare for a month recovery and plan for missing school days as it inches closer.

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.