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.

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.

Port : New Treatment

I have not been on here yet again in a long time to give an update. It got so hard to type up a review of my life. The basic jist: I started with double vision along with worsened symptoms which was an all new low. The doctor decided that since I was basically to the point of being forced to stay home, not drive, not work, not do anything and suffering such worse symptoms it was time to treat more aggressively again. We decided to go with the port to avoid the clotting I faced with the PICC line and treat as aggressive as possible. I am on IV Zithro and Vancomycin right now. The Port placement is an actual surgical procedure. The create an inch incision with a pocket under the skin where the power port is placed, the line goes up over your collar bone and another incision is placed where it enters the jugular vein and then proceeds to the top of your heart. I am still healing a week later, slight discomfort from the tub over my collar bone which is visible. I had many complications with the procedure. The sedation did not work, I was wide awake, the Lidocaine did not work, Sensorcaine helped, I developed a histamine reaction to the radiation and was throwing up and red and itchy after the procedure, which Benadryl and Zofran helped. Now I am home and was hooked up to 8 hours of IV medicine yesterday, but we are working hard to manage that and get it down to a few hours a day. The needle which is inserted through the skin and into the port box underneath the skin stays in for the 5 days during the week goes in on Monday and out on Friday. Blood is drawn on Thursday, and Medicine runs multiple hours for the 5 week days. People have not been understanding of how home bound I am, but its not just being on IV medicine and having a port in that keeps me home bound. I Simply do not feel very well! I will still be trying work on Friday and Saturday night, and I will be able to get good showers in Friday nights and Monday mornings. This is y life, IV medicines, still on Oral Meds, constant nausea, double vision, unable to drive, stuck home during the week, and all trying to keep my head up.

Liver Problems

The past month I have suffered sever nausea and spent some nights hanging over a bucket all night, as well as fatigue, migraines, dizziness, weakness, lack of appetite, weight gain, dehydration, bowel pain and discomfort, and we thought it was because of the switch of medicines. Now we find out from a call from the LLMD nurse that my liver levels are  fairly elevated, more than three times the normal amount. I was taken immediately off of all my oral antibiotics and put on Milk Thistle for liver support. I'm still nauseas and ill after a week so tomorrow we will see what the liver test comes back like for the second time and depending on the results I may have to get a liver ultrasound to make sure nothing is severely messed up in there. Maybe after we figure this road block out we will be able to get me feeling near normal. It's amazing to think that even with liver inflammation I have been horseback riding again for the first time in two years, working for four days, attending an outdoor music festival, blasting through schoolwork, and possibly even receiving a promotion in Civil Air Patrol this upcoming Thursday night.