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.

Result of the Cardiologist Appointment

I had my Cardiologist appointment yesterday and I must say, I had the best appointment possible. The specialist was incredibly compassionate and understanding, hearing me out about the fact I suffer from Lyme Disease and have been on and off of treatment for 5 years and on IV antibiotics currently, even acknowledging the port and saying the two magical words: 'I understand'. He seemed to have a few different ideas of my prognosis, and wanted to run a few more tests to see what is going on. He believed me, listened, explained everything fully, and held eye contact. These are difficult traits to have with a consultation appointment nowadays with the medical field feeling entitled and sidetracked, calling every patient a drug seeker or hypochondriac. However Dr. Lootens of Concord Cardiology was not the cookie cutter physician. He was amazing, and I'm excited to work with him on figuring out my high heart rate and heart palpitations. Currently I had a 24 hour Holter monitor on to record my heart rhythm through everyday activities, which I return in a few hours and wait a week for the results. Next Wednesday morning I have a Echo Cardiogram where they will ultrasound the structure of my heart and cancel out the possibility of physical defects. These two tests should answer a lot of questions, and if needed we can try to push the insurance company to cover the new 2 week Zio monitor, a silicome patch on the chest that is waterproof and adhered on, measuring the heart and blood pressure for two weeks straight to give a better picture of the possible problems. The hope is to find something that does not require a long term treatment. There must be something going on, as I have suffered palpitations for almost 2 years and my heart rate can reach 200 bpm with a simple moderately inclined walk at the gym in a matter of 3 minutes. Hopefully this is just the result of genetics, high heart rate runs in the females for 3 generations. Possibly the cause of not being in shape. For now I wear the monitor and hope for answers, waiting for the return to the office on the 19th.

Planet Fitness, Starting Out!

After months of deliberation I decided that living in New Hampshire is not conducive to a work-out friendly outdoor environment. My friend Rose and I had wanted to start getting active again. I wanted to raise my serotonin and fight depression, anxiety, and fatigue while strengthening my legs for horseback riding and skiing. She wanted to lose weight and gain strength for military goals. We have both finally signed up for the planet fitness black card and decided to split the $20 per month price. It has been almost a month of exercising, and though I have had some problems between my heart rate and liver, and even some magnesium deficiency I can truly say I have made the right decision. I go late at night typically, and as much as possible. Every day is difficult since she has school and I have a chronic illness and also work and classes at night, but I manage to push through a lot of obstacles to get to the gym for an hour or two. Already after a few short weeks I have increased my weights with my lower body from 30 pounds to 90 pounds. I do 15 repetitions, 3 to 4 sets if I can and only after 15 minutes of stretching and 15 minutes of a walk/jog on an incline to warm my muscles up. It is not easy for me, as my body hurts and arthritis flares in the winter months, but improvement is really important. If I can improve every three weeks at this rate, I will notice a huge difference in 3 months time and be conquering my leg workouts with at least 150 pounds and a 10 minute jog. These are realistic goals, and important for my future coping strategies with my disease. Being able to bring my friend along with me and have us help each other out is that much better, because 75% of what's tough about going to the gym is GOING TO the gym. Once you get there you're golden!

ABC News, Shaking Things Up

Last week the producers of 20/20 reached out to me again. They expressed how the update episode is yet to be aired, and how they wanted me to be healthy and thriving through life for a positive update on my story. When I told them I had declined since they filmed the second time back in August, they were disappointed. "We really want something that can connect the viewer, and show them you are real and you are doing well, something inspiring" Which I was not able to provide them currently. Still they push off the update episode airing until the right time and I fight for a day I will feel better. One of the important things they brought up over the course of my connection to ABC News' 20/20, was how people want to hear more about just my illness, but my life as a teenager with an illness. For this reason I decided to post from here on out about personal matters as well as medical ones. In my eyes, a blog is not a diary and not a good place to air out dirty laundry. However, if people want to know what goes through my mind, and where I see myself in the future, and how my dating life or school life or work life is, then I will have to share a few stories. I want nothing more than to help someone out there feel like they are not alone. So far my dry writing concept has appealed to parents and adults suffering with Lyme or children with the disease, but to all you teenage girls and boys out there: I'm struggling to be a normal teen too. It has affected my entire teenage years, from the time I was 12, and I want you to feel like you can connect with my story and feel encouraged to keep swimming! I have often thought of writing a book with collections of my stories of life, lyme, and living through teen years/young adulthood. It is still an option for me, when my brain becomes more clear and I can write for hours on end (not right now). I think sharing my unique story would be something I could look back on and appreciate 50 years from now. I just wish I was well enough to write it out. The Biography of Me, sounds quite cheesy when you think about it, but I have more life experience that some people twice my age do, and why not share it with the world in a series of funny, heart wrenching,  and inspiring twists? This is something I will consider in time, possibly even begin writing someday. For now I await 20/20's update episode, to tell the world about my pageantry and dating life and all the rest, and I will blog about some of my past year as I transitioned into legal adulthood and took on responsibility I wish I could give back.

My Body as Pandora's Box, New Cardio Symptoms

One thing I learned really quickly to appreciate about life is that it has never been something that has gotten boring for me. I have always been to a point where everything seems like a plateau that lasts only a short time, then a turn of events either ends me in a free fall toward earth or on a cloud somewhere embracing greatness. My most recent turn of events starting off the 2014 year were nothing fluffy and pretty and cloud like at all. It all started with my new gym routine. I noticed my first day of working out that my heart rate jumped up to 205 and all I was doing was a gentle incline at a walk on the treadmill. That level of bpm is not healthy, but I didn't know any different at first. I continued to return each day with my friend Rose, simply doing some stretches then a walk for about 15 minutes, and occasionally picking up an additional 15 minutes on the stationary bikes. Still my heart rate according the the hand sensors on the equipment was around 200 or more each workout. After a few days of this I began bringing it up in conversation with people I had known for years, the type of people that might as well own the gym because they are there so often and have worked out enough. They kept commenting on how their heart rate at  a full run never exceeds 180 and I should be cautious. I researched the typical target heart rate for someone engaging in cardio strengthening exercise at my age and weight, and all the figures said I should aim for around 170 bpm. How could I control that, if my heart rate skyrocketed at just a walk? After about a week and connecting the dots I called up my Primary Care Physician who scheduled me for an appointment that week, with concern for worse problems. After checking me out in the office and hearing a normal heart at a calm pace of 80 beats per minute, she performed an ekg and decided to refer me to a Cardiologist to double check what could be happening, and ordered a 24 hour halter monitor. Within five days I was receiving a call from my Lyme Specialist's office. The blood work I had drawn every Monday while on IV medications came back abnormal, with liver function levels double the suggested range. Immediately the LLMD stopped all antibiotic treatment for a week, prescribing Milk Thistle for liver cleansing and telling me to keep hydrated. After a week I returned to the lab yesterday to recheck the levels. I'm still waiting for the results to come back about that test while I reschedule work tomorrow so I can make it to my Cardiologist appointment. All of these things add up to a hurting, nauseas, declining, forgetful young girl who still is pushing through for friends, the gym, school, work, volunteer activities, and last but certainly not least, horses. By the end of the week I will have a better idea of what the plan is for my treatment and coping strategies, and hopefully my LLMD will set my mind at ease next Wednesday when I see him.

Two Steps Forward, Three Steps Back

After four weeks of being on IV Doxycycline, the last medication left I had to try for IV, I still felt no better. My memory betrays me just as it does those around me, and I forget the exact reason why I stopped IV Doxy. I remember a phone call with the nurse at the doctor's office saying it would be best to stop the medicine, maybe from me still not improving? They wanted me to start back on Mepron for the month, and I only remembered to take the yellow paint-like liquid once. In fact for almost an entire month I completely forgot probiotics, Nystatin, B12, and Magnesium which are all important supplements I take to help me get through from day to day. I was told to wait another month and see if just the Clindamycin would do anything, however I knew in my heart that it wouldn't. Why sound so pessimistic? Well, I know I've been on the medication in the past, two separate times. I know that once you do a medication seriously and then stop, the bacteria tends to seem more immune to the substance in the future. Some argue that fact with the idea of pulse therapy where you start the medication for a short bit of time, then stop it long enough for the bacteria to be caught off guard when you restart two weeks later. Pulse therapy is a very common treatment plan used by New York specialist Dr. Horrowitz, I believe, not something that ever worked in my situation. For some people, those more sensitive to medication changes that feel Herx type reactions with treatment, Pulse therapy can be the difference in successful treatment. I have always been difficult to treat, with a poorly absorbing stomach and impossible Lyme symptoms. Very few medications made me feel a possible Herx, and very very few made me feel better. There was a total of two summers I did very well with no rhyme or reason, and I am beginning to think it was more heat and mild weather related than it was medications. Beside all of that, I also know that the second time I tried Clindamycin back in the spring, I felt no effect from it. My main hope in my treatment after leaving my LLMD's office was for the Iv Doxycycline, keeping at the forefront of my mind its effectiveness in treating Lyme and Coinfections like Bartonella and Babesia, both I'm suspected to have. For now I slowly decline until I see my Doctor again, dealing with other issues in my personal life, and trying to survive a more normal life as a student and part time employee.