Search This Blog

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.