I was hoping to keep the site updated daily with journal entries. Obviously, I have had some hard and trying days, making that near impossible to do. I did however, keep a journal daily to the best of my ability to track my own progress, as well as share with all of you.
Arrived at Columbia Presbyterian from Nassau University Medical Center around 11pm. Columbia accepted me as a potential heart transplant evaluation patient.
12/25/12- Christmas Day
Had an OK Christmas. I was in the Cardiac Care Unit, and mom decorated with my stocking, stickees for the windows, and a picture she thought I had painted in 5th grade. Upon further investigation, it had Mr. Ludwig's name on it. Melissa had him as a teacher, not me.....
12/26/12- MedicAid Approval
Mom went to the MedicAid office first thing in the morning, and by the time she got to me at the hospital, my case had already been assigned a number. Getting MedicAid approval in less than 24 hours is unheard of! It normally takes a minimum of 40 days. Dr. Uriel, my cardiologist, met with the LVAD committee that morning, and pushed for me to have an LVAD put in as soon as possible. They decided they would do the surgery later that day. I was freaking out. Mom was too. Because the surgery was not pre-scheduled, as an add on, things got late and they decided not to do it that night. They scheduled it for the first surgery in the morning with Dr. Takayama.
12/27/12- Surgery Day
I went up for surgery at 830am. Dr. Takayama did not speak to mom and dad until 430pm. The only "surprise" was that they saw adhesions where the heart was stuck on the pericardium. Dr. Takayama had a cardiothorasic surgeon come in to the operating room to biopsy some enlarged lymph nodes. The CT surgeon did not find any enlarged nodes, and it was decided not to poke around further. Mom and Dad were able to come in to see me around 9pm in CTICU. I was out cold.
12/28/12- Day 1 Post Op
Throughout the night, I had a breathing tube in and was heavily medicated. My only form of communication was by writing on a piece of paper. Once I was coherent, it was enjoyable reading what I had written. Things from the Incredible Hulk to strippers. And somehow I managed to score my nurse Jen's phone number on there as well lol. Being that heavily medicated was strange, I was seeing some pretty horrible images, I was upset that I wasn't dreaming of unicorns and rainbows, but more monsters and death.
They removed 2 tubes. The one taken out of my belly hurt so bad, it caused a lot of pain and nausea. With a lot of help, I stood up for the first time and then sat down in a chair. I sat in that chair for about 2 1/2 hours. It felt so good to sit in a chair. I was supposed to go to bed at 10pm, but I needed an arterial line changed. The first doctor took an hour and a half and still could not find good access to the arterial line. MAJOR pain. The second doctor got the line put in in about 20 minutes. Finally got to sleep around 1am.
Actually ate some significant amount of food for the first time since pre-surgery. I began the day only needed to use my pain medication button every 15 minutes. I took several small steps to get to the chair today, then sat there for a few hours again. As the day went on, I started feeling weaker and defeated. I didn't feel as though I was constantly getting better, but it wasn't that I wasn't getting better, it was that I was doing more with my days and wearing myself out more. No sleep tonight- pain, nausea, and a lot of dressing and tube changes. They were giving my 5x the dose of my pain medications to try and get me to sleep, but was unsuccessful.
12/31/12-New Years Eve Day
Ate a decent breakfast, but hardly anything for lunch. A lot of stomach bloating which was making me feel nauseous. I had a low grade fever. My skin is so sensitive to the tape. When the tape was removed, I was getting cuts from it. It was a hard day overall, but I felt better at bedtime than during the day. Got really emotional at bedtime. So many great things in 2012 to be thankful for, as well as plenty of unhappy memories that will become less focused on. 2013 is offering me a one time only fresh start(Only $19.99 + S&H). I am going to do as good a job with my second chance at life as I can. Spend time with my family, Rocks, better long distance communication, trusting my wonderful support system, and allowing them full access into my life. I think it will take a long time to adjust to my new lifestyle, but I am prepared to handle whatever else comes my way. Hit me with your best shot 2013!