Since writing my last blog about the Stockdale Paradox, I swear life decided to see if I could truly put the paradox’s lesson into practice. In the last 5 days, I have been faced with some of the most difficult decisions in my life. It all started the morning after writing that Stockdale blog. I woke up early, before rounds (which I never do), washed up, brushed my teeth, put a fresh new hospital gown on, and set my paints up to paint. I was ready to take back control of my life by really trying to let go of any perceived control I had over my current situation, and essentially live in the moment. I had been having some irregular beats, v-tach, at night that I hadn’t had before. When someone goes into an abnormal rhythm (on this floor- cardiac ICU), a code is called and everyone rushes to that room to make sure the patient is ok. I had been having just a couple here and there, nothing to merit a full code. The night after I wrote my blog about the Stockdale Paradox I went into one of these rhythms, and for the first time I could feel it. I felt bloated and out of breathe, full although I hadn’t eaten. The code was called and within a minute the room was filled with nurses and doctors yelling commands at each other. One person was taking blood while another was putting the stickers on for an EKG, and they brought the paddles in just in case – which, let me tell you, is not a comforting feeling. Once I was out of that rhythm (I may only have been in it for a minute or two) the room became empty just as quickly it had filled up. I felt fine, no one really said anything… just made sure I was ok, and they kept the paddles next to my bed for the night (again, not so comforting).
So here I am all fresh and clean ready to start my day, trying to live simply in the moment- when rounds walk in, including one of the head transplant doctor that I am very close with. She told me that this v-tach was very serious and that she didn’t know if I would make it alive to my transplant. She said, the likelihood of me going into a rhythm that they couldn’t get me out of was just too high. That I hadn’t gotten any calls for potential hearts, there was still a handful of patients ahead of me, and that hearts were simply very hard to come by right now. She looked into my eyes and said that she was afraid I didn’t have long- and by long she meant at any moment I could go into this rhythm and not come out. The ultimate solution for this would be to get something called a bi-vad… but I would need two because both sides of my heart are not functioning. A bi-vad is a device that requires open-heart surgery and essentially is placed on your heart to do the pumping for you. A port (hole in your stomach) is made so the wires can come out and be powered by batteries. Batteries! Usually, people only need an L-Vad for left-ventricular failure. Because the failure is on both sides of my heart, I would need two and that means I would also need two ports for battery connection. After explaining this to me, (I knew what the L-vads were but never thought I would become a candidate) I was asked to start thinking about my decision as well as resuscitation plan. She looked into my eyes with tears streaming down her face and she said, “I know, we don’t want this as much as you don’t… But, we are scared- and we’ve seen this enough to know you are too sick to wait. It is your decision, lets get your family down here, Emma, I don’t want you to die either.” We both cried together.
When I first said yes to a transplant, I set limits in my mind as to how far I would go to stay alive. I would never want to be kept on life support if I had any sort of brain damage, and I said if I got too sick to wait for my heart, I would go home. I didn’t want to live on machines… the other part of the vads is that because they can sustain you longer, they can put you lower on the list, and your wait for your heart could become even longer. Waiting with mechanical devices coming out of my abdomen into battery packs isn’t exactly my idea of a quality life. Now, faced with this decision saying that I have felt overwhelmed is an understatement. While the vads are a last resort, they are trying everything they can do to help me last until my transplant without mechanical intervention. I have had three caths in the last 5 days (so much for my two week break), one of which they had to take five biopsies. I have been given incredibly large amounts of diuretics to shed the water weight that comes along with heart failure, and I have been given anti-arrhythmia drugs to try and help the v-tach. My sister, brother-in-law, niece, both parents and a best friend of mine all drove to be present for immediate support. I don’t know what I would have done without them. It was apparent right away that my health had gone to another stage, one we were not expecting.
When it came time to talk about what I would want, I asked my family first. What did THEY want me to do? I got a resounding common reply, “do whatever it takes to stay in our lives.” WHATEVER it takes. The sincerity of their pleas was overwhelming, when I told them I had told myself I wouldn’t go that far if that was what it came to, they told me they supported my decision no matter what and that they would do whatever possible to make me comfortable. I’ve thought about it a lot- every moment. While I was not quite yet at the point where I needed emergency surgery for the vads, it could happen at any moment. I asked myself, if I can’t fight for myself, do I do it for those who love and need me? This question played over and over in my mind- meanwhile, I lost some water weight and hadn’t shown any more signs of v-tach- all a very good sign. Even though I was looking to be doing better, I still had to make a plan for the what ifs. Being told all of a sudden that it didn’t seem like I would live to see my transplant without intervention, and that it could happen at any moment was overwhelming. I asked myself, if I can’t/don’t want to fight for myself- do I do it for those around me whose lives my death would heavily effect? While I am still questioning myself over and over, at this point in time I have said yes. I will fight for my family and friends. I will do whatever it takes to get to that transplant as long as it meant I were to lead a life that was better than before. No brain injuries, no paralysis, If I am going to be resuscitated and possibly be put on mechanical devices, I want to be a better me when I come out. That’s the whole point of this, right? To get better? To finally have a life that I can live that I consider a life worth living… and so my plan has been made, for now, that I will go as far as I have to go, to get this heart as long as the outcome is a quality life.
While I lost some water weight this week, and my heart function has gotten better, I had a few of those irregular beats again last night. It is scary, it is sad, but as the Stockholm paradox teaches- this is my reality. And I am trying to take it one day at a time.