I am approaching two months of dialysis very shortly and I want to write about what I have experienced so far.

Several things I have learned about myself in this “new normal”:

  • New co-working space (sort of): Outside of a coffeehouse and a library, I have found that a dialysis clinic is a good place to zone out and be with your own thoughts. After all, you’re not doing much for 3.5 hours, three times a week, but watch television, read a book, or have your nose in your phone. I’ve started to watch The Food Network a lot recently. Not that I’m hungry, but I’m interested to see how you cook food better and be creative.
  • Pass on the water: Drinking water or liquids is good. Too much of it can result in cramping during treatment. Your kidneys can only flush so much out of your system. The same goes with a dialysis machine.
  • Appetite: I don’t have much of an appetite anymore. I have also started to dislike certain foods that I ate regularly before. I get violently sick after nibbling on a Reese’s peanut butter cup or a Sunbelt granola bar.
  • Physical challenges: my balance is a little off, since I’m not carrying so much edema in my legs. It’s weird as hell seeing your legs go from the size of cannons to “normal”. Getting around takes a little more time. My vision has changed slightly. I’m so not ready to get new glasses. I just got new prescription sunglasses in February.
  • Speech and Brain: This is where I have the most trouble with. I didn’t know what septic shock was, until my physician mentioned it after I was released from the hospital in May. Since starting dialysis, I have been unable to form complete sentences, and stuttering and slurring certain words. As I read about the affects of septic shock, I can only conclude why I was stuttering: septic shock effects the entire body: major organs, brain, and limbs.

According to the Sepsis Alliance, nearly 1.4 million people survive sepsis, but they face life-long challenging changes. Sepsis have a high death rate, particularly with the elderly, young, or patients with weakened immune systems. Since I live with diabetes, I fall into the latter category.

In a 2010 article, Medpage Today reported that 59.3% of patients hospitalized with severe sepsis saw worse cognitive or physical function or both by their first post-sepsis assessment.

I knew my kidneys have failed, but no one was able to figure out why I am unable to talk smoothly. Septic shock leaves a mark, permanent or temporary, on your motor and cognitive skills. You feel like you are trying to get out of mud.

The brain, by nature, process what you see or hear, and then sends a message to the mouth to relay what we hear and see. As a life long mild stutter, it has become increasingly difficult to say what I am thinking or want to say.

It is frustrating to run into friends and people I know, and not know their names right away and recognize them, as well as carry a normal conversation without stammering constantly.

The inability to have a conversation with people have become a rather embarrassing predicament.

The cognitive and motor skills are the nerve centers to how we process and dispense information. When those skills are affected, or taken away, by a stroke for example, patients feel trapped inside their own bodies. We take talking as a simple task for which we blindly take for granted.

I will need intense speech therapy/rehab in order to relearn how to talk. I love to write, but not everyone wants to read your thoughts…they want to hear it.

My body is going through changes that, to be honest, frightens me. Have I been sick for so long that I didn’t realize that it was silently killing me?

Going through kidney dialysis, and the goal to get on the transplant list in the fall might be the easiest tasks to do.

It’s my mental and vocal capacities that I worry about. I need those in order to communicate.

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One thought on “Five Things I’ve Learned So Far in Dialysis

  1. Romelle, I hope you recognized me the other night when you saw me at the DSM unveiling. I will remember not to sneak up on you like I did. Thank you for sharing your struggles!

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