Struggling thoughts during Endocarditis
3/3/16
First day home from hospital after 13 days. Too much positivity feels like telling my soul that the way it feels is wrong. which makes me feel even worse. where are the people to confide in, to tell me its ok to feel beat up. let me feel how i feel without shame. let me wade in sadness so i can come out the other side. you have to let me feel sadness, its a human emotion. i wish one person would tell me its ok to feel sad.
3/22/16
After being home for less than 24 hours I returned to the hospital after a miserable night with a headache, shivers and night sweats. I spent most of the first night home on the couch watching a movie called “whats eating gilbert grape” trying to get through the night. Around 3 in the afternoon the violent shakes came back and I spent the next 30 minutes in pants and a hoodie laying in the sun trying to stop the chills and shakes. My toes turned purple couple with a headache and fever. Before I could even spend a full day home, I was in the car headed back to the hospital after much disapproval from my end. This time we were headed to St. Joes hospital in Phoenix so I could be near my cardiologist as well as get a 2nd look from the infectious disease doctor there. I spent another 4 days in the hospital and was overall feeling pretty good considering everything. On March 10th around noon I began having pain in the upper left side of the abdomen. The pain continually worsened throughout the day and by the time I went to bed around midnight I was in agony. I tried to sleep away the pain in hopes that I would wake up pain free. Thats usually my solution for solving pain, try not to focus on it and sleep it away. Unfortunately that doesn’t work, I woke at 4am with sharp knifing pains in my abdomen. I continued with my strategy and woke up again at 6am barely able to move. I was nearly doubled over trying to as the pain in my side contracted my body to fold itself. I am never one to want to go to the hospital, even with my history of heart disease and two open heart surgeries. I resist as long as I can, and because of that I have barely escaped death several times. I want nothing to do with hospitals if I don’t have to go. I’ve spent more in hospitals than anyone should have too. So the day before my 25th birthday I was headed back to the hospital for now the 4th time in less than a month. After spending all day in the ER, during a CT scan of my abdomen they found that a piece of the vegetation on my aortic valve had broken off and traveled to my spleen or also known as an embolism of the spleen. Thankfully there was no abscess and they sent me home with Percocet to manage the pain. The intense pain only last a few days and then it subsided. A piece of vegetation breaking off and traveling to the brain or another Embolism represents one of the most frequent and severe complications of IE and has been reported to occur in 13% to 49% with IE (http://circ.ahajournals.org/content/112/1/69.full). A big concern is having an embolism break off and travel to the brain causing a stroke leading to death, Another main concern is not detecting Infective Endocarditis in time and the vegetation destroys your heart valve causing heart failure and ultimately death. There are many different studies on Infective Endocarditis and nearly all of them have high mortality rates. High being around 20-40%. Im not out of the woods yet, but I would probably would have added to that mortality rate if it wasn’t for my parents taking the initiative of driving me to the ER. I had gone to the doctors office a couple days prior and I was examined for no more than 3 minutes, tested for the Flu which came back negative, but the doctor insisted I had the Flu anyway, prescribed me antibiotics and sent me home. I knew I didn’t have the fucking flu, if I would have believed him and started taking the antibiotics in hopes they would work I would be dead or at best I would be having another open heart surgery. The scenario right there is why you always get a second opinion and also why I hate going to the doctors. Yes they save many lives, but they miss so much at the same time and it costs a fortune. Infective Endocarditis is extremely serious with a high mortality rate if it is not caught in time. But even with my heart history and many symptoms of the endocarditis he didn’t take me serious and lumped me into the flu category like everyone else. It’s so frustrating. I think I need to act sicker sometimes, I hate to show weakness. I played NCAA college basketball, I was taught to never show weakness, the minute you do, your opponent has you beat. That mentality is engrained in my head after a lifetime of basketball. I think that’s why I have trouble telling doctors how much pain I’m in. In the hospital the sicker you act, the more attention you receive.
I have been home for approximately two weeks now with a PICC line and I administer the IV antibiotics myself twice a day every day. I have been on antibiotics for a fun month now. I have until April 14th with IV antibiotics and then I switch over to oral. I am restricted completely on activity except for things like walking and doing the dishes. I have essentially done nothing physically for 40 days, I sit back as my muscles deteriorate more and more everyday. Not knowing when I will be cleared to do anything physical again. I really have no idea what my life will look like after this infection is taken care of. I have heard I could be on antibiotics for years, I have read that mortality rates rise year after year with endocarditis and that the chance of the disease returning is something to watch out for. I have a job that starts June 21st that is an adventure leadership position that I have yet to get trained for and my time is running out. I hadn’t been more excited about an opportunity since I signed my scholarship to attend UHH on a full ride basketball scholarship. Now that opportunity looks bleak. I wish there was more information on this disease. I wish I had an idea of what the future looks like. But I have no answers and continue to live day by day essentially in a state of survival. I’ve never felt more detached from reality. Everyone asks how I am feeling. I feel ok, but thats not the concern anymore. No one knows the risk I am facing and the serious infection I have. But thats ok, I am used to no one understanding. People see that you are out of the hospital so everything must be alright now. I wish that was the case. I am tired of being restricted. I am 25 but I don’t relate to the number anymore. I don’t feel 25, I’ve lost so much of my youth due to heart issues. So much time spent restricted. You would think I am 70. Everyone asks me what I do or what I want to do, I feel inadequate with a basic job and a business degree. But open heart surgery changes everything. I can’t go down the normal path and get a corporate job selling my already awakened soul. I don’t need nice things. Survival is life now. But I need money to survive, especially with the high costs of health. I feel selfish, I am so worried about myself now. Heart disease has taken over my life. I want a wife and kids someday, but it’s hard for me to look that far ahead, I am just trying to survive tomorrow at this point. Mentally and physically. I have no friends in AZ anymore. I mean I have a lot of friends, but I don’t hang out with very many. Our priorities and lifestyles have changed. I miss laughing. I should have never left Hawaii, I am not the same person in AZ. My home is a place of sorrow. my lifestyle was so much healthier in Hawaii. I need to go back, just for my health. I think. But then I am far away from my surgeon and cardiologist. Oh well. I can’t stay where I am. It’s not healthy for me. I just want to be healthy.
3/23/16
My dreams is where I live now. Its an escape from being stuck in my physical body that is limited to this house. But even in my dream last night I had Endocarditis, everyone was playing basketball and I had to watch, I couldn’t escape.
3/28/16
What’s challenging about having endocarditis is that there is really no way to help yourself improve. With maybe the one exception of eating healthy, but that should be always anyway. Every other challenge in life there is usually a way to combat that challenge, but with this infection there isn’t a way. Waiting is the only option. Letting the antibiotics flow through your body hoping that they will work and bring back life. With open heart surgery, every day was a day to get stronger and healthier, each day was a step towards getting better. There was results that could be quantified, results that could be seen and felt. With Endocarditis, there is none of that. Each day is another day of waiting, with many restrictions. Hoping that in your next doctor visit there will be answers, providing understanding and good news. But the fact is there is a growth on my aortic valve and I don’t know what its doing, yes I don’t feel great but I also don’t feel terrible. The couple times I noticed my heart rate rose, I had headache, discomfort and became anxious. Then everything became real again.
