Sometimes, even with the best doctors, and the best teams things go sideways. As far as I can tell the reason for this? We are all humans, and as my nephew once said when he was three or four “We are just made of meat.” Sometimes the truest words come out of the mouths of children. At the end of the day, we are all just sentient meat sacks doing the best we can. The hard part, when you are dealing with matters like your health and life, is deciding how human you are willing to let the people charged with taking care of your needs be. The even harder part for me is not letting a bad day make me lose trust in the process irrevocably.
Over the last few weeks, the subject of my upcoming appointment with my ACHD (adult congenital heart disease) doc has been ever-present. Due to my struggles with PTSD related to medical situations, I spend copious amounts of time with my therapist preparing for appointments. I do my best to work through any feelings I may have leading up to the appointment, any apprehension, doubts, worries, fears, or frustrations. We work together to get to the bottom of what I am feeling and try our best to prevent problems before they arise. The enemy of anxiety is preparation.
The biggest hiccup for this appointment? I would be going alone. This was by my own design, I had many offers for the company of my family. All they need is a little forewarning and planning and any one of them could have been present, but I was certain I wanted to do this alone. I had things I wanted to discuss one on one with my doctor and now that the hard part of hearing out the transplant doctor was over, I felt like I could manage a measly ACHD appointment with ease. More than that, there was a not insignificant part of myself that needed to know I COULD do this on my own, that I wasn’t so stunned by recent revelations that all the progress I had made in becoming a mature, informed, self-advocate who could stay present, even in the face of troubling news hadn’t been undone. I was bound and determined that this visit would be just me and I was excited about it.
My plan was pretty simple. I had a few mundane things to talk about in reference to making myself feel better in the short term. Additionally, I wanted to have a frank discussion about where I stood as far as transplant was concerned. I expected to tell him how I have spent the three months since I was, in many ways, blindsided by his revelation that it was time to start the discussion about transplant and had been preparing myself mentally for the prospect. I wanted to let him know how far I had come in that process and how confident I felt that this is the right path at the right time, and I am in the right state of mind. I was going to discuss how I was feeling tired of trying one more thing that likely would not work, how I have been bone tired all the time, and that I have not been able to do the things I was able to do even a year ago, and how the simplest things like laundry have the ability to wear me out. Lastly, I wanted to have what to me was the hardest part of the conversation, a discussion about what kind of outcomes he had seen in those with anatomy like mine, post-transplant. All this and I was ready to do it all myself, as a grown, capable adult human.
My plan went sideways almost instantly. When meeting with the fellow before I saw my doctor, I could tell that he was having a hard day. The man who has always come into my appointments well put together and with a pep in his step was disheveled, obviously tired and stressed, with the messed up mane of a man who had been gripping his hair in frustration. As I answered his questions, he seemed unaffected, and even uninterested. I felt myself starting to drift from confident to triggered. There have been many times in my life where I have felt, justified or not, that doctor’s interest is dependent on the emergent severity of my symptoms. So it was pretty triggering to feel as though my mundane complaints were not interesting to a member of the same team that had told me that in situations like mine decline and decision to list a patient isn’t usually emergent or extremely symptomatic, rather it is a slow decline in quality of life and abilities. I did my best to stay present. I decided to swing at the low-hanging fruit, wondering out loud if once again tackling my iron deficiency was worth a shot for short-term energy. I was concerned about some chest pains I had been experiencing, “likely musculoskeletal” was the answer I received with no follow-up. I expected that as it often is, I have a condition similar to arthritis that affects my chest wall. Finally, I told him that I wanted to talk to my doctor about my decreased endurance and tolerance for exertion, and how even with the new med, it was not improving.
When my doctor entered the room he was as kind as usual, though he did seem tired. I don’t know where these two men had been before they were in this room with me but I had the distinct feeling wherever it was, they had been there a long, stressful time. The appointment started as expected, my doctor asked how I had been. I once again explained how I was feeling tired and while the new medication my other doctor had started did seem to help a bit, it was not life-changing. I expressed how I had made some changes to my diet as well in an effort to lose weight and restrict my sodium even more, but I was still feeling as though I was ready to start moving in the direction of heart transplant testing. It was here where things began to go sideways.
At my previous appointment my doctor made it abundantly clear that I could not diet or exercise my way out of the heart failure I was faced with, go back to the blog entry, I talked about it there too. Of course, those things were important as always, but they were not going to “fix” the issue at hand, nor was the issue my fault because I was overweight and out of shape. This conversation was immensely appreciated because as much as I might know that deep down, it is a hard thing to remember when you feel like perhaps your heart is fine and the only issue here is being completely out of shape. Today, when addressing my tiredness he went right to my excess weight and the need to change my diet. Did he not hear what I had just said about eating tasteless, high protein overnight oatmeal for breakfast every day, and changing from lunches of leftovers or at worst vending machine food to a vegan, plant protein shake? Did he not remember telling me to do what I could, when I could? I was telling him that at the end of my day of work where I usually walk almost 3 miles, I had nothing more in the tank. I could barely make myself dinner before crawling into bed and trying again the next day, much less taking a walk or jumping on my bike. I felt like I was spinning out, and that despite my efforts I had failed. At that moment my PTSD brain started reaching for survival mechanisms.
He went on to address my question about the potential of moving forward with testing for transplant. I wish, dear reader, that I could tell you what was said here. I wish that more than anything, however, my amygdala finally overpowered me. That lizard part of my brain completely shut off any part of my brain that could absorb information. The lizard was off the leash and I was out of the driver’s seat, and by the time I caught the lizard’s tail and clawed my way into the passenger seat, the conversation was all but over and the parts that I could recollect were not at all what I was expecting. Under better circumstances, I would have asked questions, gotten clarification, asked what had changed, and why his opinion was different from that of my other doctor. I would have done a lot of things differently if but at this point I had been triggered so badly that I was unable to recover. I had dissociated so completely I felt foolish, small, and incompetent, I didn’t want to make it worse by asking questions that were born out of fear, and convoluted by a stressed-out brain.
Sitting in my car I messaged my family and informed them of what had happened. I felt like I had failed myself, that all my work was for nothing, and that as much as I tried I may never be able to mentally handle the twists and turns of this process. Over the next 24 hours, I spiraled in almost every way I had to spiral. I won’t get into all the lies that my brain told me, but there were many and some of them were quite creative. I knew I was out of reach of my tools, I wanted to feel better and I knew I could, so I reached out. I reached out to my family, I reached out to my therapist, and I talked about what happened and how I was feeling. Once I was more clear on why I was feeling how I was feeling, I could use my tools to cope with what had happened and why it was affecting me so greatly. And after processing, I was able to write a group of follow-up questions to send to my doctor for a second chance to better communicate with each other.
In the end, there are a few things that are true about this appointment. The appointment didn’t go as I had planned. My doctors, as humans, were very likely in the middle of an off day, or a tough situation. While this shouldn’t have been an issue in my appointment, humans are going to humans and it ended up that way. Additionally, I learned a big lesson, this process is enormous and taxing, it is emotional and it is going to be triggering from time to time, it will be in my best interest to not attend appointments alone for this reason. This fact isn’t a comment on my character, it is just a fact about the situation. Finally, when a human having an off day, meets a human who is stretching her emotional limits, there will likely be misunderstandings and friction. One less-than-stellar appointment isn’t going to change the way I proceed. I still feel more comfortable here, with these doctors than I have felt with other doctors in the recent past. I believe that I am in the right place, to get the care I need, whatever that involves moving forward. While this was not my favorite appointment it is because it is so far from what I have come to expect from them. I have been in situations where this type of appointment was the norm, which is why I have been so thrilled with these doctors and this team.
On a separate note, I would like to say this, your support and care dear reader are appreciated beyond measure. I want to share this process with you because in sharing with you, I am able to work through the process for myself, share with others in my same position, and record forever how this process felt. This said I need to make it very clear, no one, not one person on this earth is more invested in my health and well-being than me. I am and will continue to do whatever it takes to give myself the longest and most full life possible. This is not a post telling you I have doubts about my team. If I doubted my team, this post would be about ME looking for a new one. All of this is to say, please don’t tell me I need to change doctors, teams, and locations. That is a decision for me to make, and extra input from others, though I know meant well, only causes me more conflict than is needed. Should the moment ever come that I feel that a change is needed, I will do the research, and find the place that is most suited to my needs. I have done it before and if needed I will do it again. I am after all a grown, capable human.
Capes And Roller Skates 