Wednesday, June 25, 2014

It's Good to be the Robby

This whole bit started when NXStage, the good people who provide with my all my dialysis necessities, asked me to write about what independence means to me. This should have been a cinch but in spite of numerous attempts to get this blog rolling, everything sounded like something Ralphie the Christmas Story kid would write for a grade school assignment.  

See, not only do I teach the occasional high school Lit class but I also write my own blog about the life of a school teacher/tour-guide/pirate wannabe learning how to live as newly found step dad and all the adventures that come with that. Should have been a piece of cake but it wasn’t.
I went back through my blog to see what I had written before. Many of the older posts had been written to pass the three and half hour treatment times of when I was hooked up to my NX Stage Cycler. The funny thing is that other than a few passing references to living with kidney disease, I had not spent any amount of time discussing what it’s like to be on home hemo dialysis in over three years. Why is that?
I had started off with peritoneal dialysis but it wasn’t the right fit for me. PD was great because I did it in my own home and around my own schedule but it wasn’t enough dialysis for me. I’m a big guy coming in at 6’4”.Within two years, my health began to decline. I looked horrible with very pale skin and huge bags under my eyes. I felt even worse and literally shuffled everywhere I went with a constant fear of tripping and not being able to get back up (which actually happened one day at school).
Even with kidney disease, I worked full time, went to grad school, and even had a part time job being a ghost tour guide for a pub crawls here in Savannah, GA.  Eventually, it got so bad that I had to quit my tour guiding (which I loved and got me out of the house). It was all I could do to stand an eight hour day then online classes for my Masters. The disease was winning and I knew it.  
My doctor and nurse convinced to get over my enormous fear of needles and switch over to home hemo dialysis. It was a challenging transition but well worth it in the long run. It took about two months but I began to feel something I hadn’t felt in some time. I felt like a regular person.
As I write this, I realize I could expound on and on about how using the NX Stage Cycler gives me the independence to control my own treatments. How being independent allows me to be treated as Robby that guy who’s a teacher and tour guide rather than that poor bastard who has kidney disease. I could talk about how being independent also affords me to look at myself not as a victim but just as some guy who has a pretty cool life.
The Tybee Flotilla last Sunday
All of those points are important in creating the sum of my whole but it doesn’t quite hit the nail on the head for me. I’ve come to understand the independence I’ve gained from becoming a home hemo patient was the puzzle piece I needed to begin living my life. It’s just pretty much as routine to me and my family as brushing my teeth. It’s just part of the day.
NX Stage asked about what independence means to me? It means I can live my life with all the risks and chances. I have been able to grow and find new opportunities. Somewhere along the way, I discovered my soul mate and two outstanding kids.  Home hemo has allowed me to live with so much going on that my life now is actually even better than before my kidneys failed.

 It means I can be normal and in the long run, that is what anybody would want. 

This is a video I made on my animoto account that might sum of all the above a little better.

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