Loss of Control

Hello, my name is Loretta Lee and I have taken the tour! I am not just a CKD patient; I am a human being with various roles to play in life like mother, grandmother, wife, sister, daughter, Registered Nurse, comforter and caregiver.  I would like to focus on being treated as a human being during my “tour” of the healthcare system. I would like you to know what impact your small actions, words and even non-verbal’s have on me. Expectations, I believe hold a great part in the tensions or misunderstandings in healthcare. We all come to the table with preconceived ideas of what our care is going to look like, how we will be treated and attended to. As a patient, I never feel so vulnerable until I enter the acute care arena.  Let me share my experience:

My lived experience encompasses many years of CKD which included a preemptive renal transplant that lasted for 20 years, followed by starting peritoneal dialysis (PD), troubleshooting the first catheter, just to go back for surgery to remove the PD catheter, insert a new one as well as place a central venous catheter (CVC) for hemodialysis (HD), My biggest fear had arrived despite me trying absolutely everything I could with my nursing knowledge although limited knowledge of PD I had lost control. My health was in the hands of the healthcare team.

 You see, I had to have plasmapheresis after my transplant, and it was a terrible experience. Not only was the placement of CVC painful, but the course of plasmapheresis did not go smoothly: I experienced adverse events with each hook up which proceeded to get worse with each treatment, leaving me to abandon it altogether. I was told that this would be a “walk in the park”, well they didn’t tell me the park was New York’s Central Park at 3 am walking around with a cool million.

So, getting back to starting hemodialysis while my new PD catheter healed, sent me into a flurry of emotions. As you may imagine, I was fearful, anxious, and felt like my life was no longer in my control: I was basically forced to do this in order to keep living. I never wanted HD, however, I knew that this had to be done and that it would only be for 2-3 weeks. I could deal with that I thought. So, in I go dutifully, to have my in-center hemodialysis 3 times a week for 5 hours each time. I quickly learned the “patient culture” and proceeded to fit in.  All the while hating every moment in that chair, feeling trapped. I couldn’t even stand to stretch for fear my blood pressure would drop and the nurses would be scooping off the floor and filling in an incident report and we know that’s not on the agenda. 

I was very thankful for the kinesiologist that got me started on cycling during my HD. She was very encouraging and empathized with me, and this gave me something to look forward to and take up some of those long 5 hours trapped in that chair. Her encouragement and empathy, her sharing of her experience with similar problems was very appreciated and comforting. During these early days, there was something that caught me off guard: 

I thought it odd and somewhat frustrating that the RNs on the units would ask me how much I wanted taken off at the start of my runs; my thought was, “You’re asking me??’ I am new to this, so I really don’t have a clue although I know it is best to take off the calculated amount. I also know that some people will have significant leg cramping if too much fluid is taken off, but I also understand the repercussions if you don’t have the best dialysis you can. I wish instead of asking me, they could have explained more as to the consequences short term & long-term insufficient dialysis and the various factors that would reduce or prevent the adverse events, like exercise.  I am not sure why they asked this? Was it because they knew I was a RN, was it one of their ways to involve me in my own care? I am still not sure, but I do know if they had explained the fluid removal volumes and the consequences then I would’ve felt more confident in having an answer and having some control.

I was arriving to HD by myself after the first one, as my husband was frustrated and because my “slot” was evenings from 6-10:30 or 11 pm, my husband would be too tired, overwhelmed and stressed to get up & go to his job. So, there I was trying to be the “good patient”; pretending I had this all under control, taking it all in my stride as best I could. I was still working as a RN in three different clinics as well.  Low and behold, my third trip in I had an emotional breakdown that engulfed me in a tidal wave of various emotions. I remember getting settled and hooked up, I knew I was exhausted, my heart felt like it was sitting heavy in my lower chest. Before I knew it, I was crying uncontrollably, it was a struggle for me to speak due to the intensity of my emotions of being overwhelmed, losing control, feeling trapped in the chair. I so wanted to be on the other side and giving the care. The best part of that night was when one of the HD RNs noticed me losing it and came over. I wasn’t sure whether this was good or not, I struggled with being so very vulnerable at that moment in time. There is no privacy: I am sitting out among my fellow CKDers where they can readily see my meltdown. I couldn’t help but to keep telling myself to “pull it together”! The reaction to a meltdown is either avoidance with hopes I will get it together, or some brave soul recognizes the need and addresses it. I had an angel there that evening: one of the RNs crouched down and put her hand on my arm and simply shut out everything else going on to focus on me. Such a simple act that provided a lifeline for me in my vulnerability, my exhaustion, my fears. Her act of touch, empathy and encouragement was such a blessing and I will be forever grateful for her nursing art.

The moment I received the BEST healthcare was when there was no medicine, procedure, or testing done, but rather, the simplicity of the human touch, the connection that is worth more to me as a patient then the latest technology or the best medical care provided. Humanity, dignity, respect and the greatest of these is humanity.