In Their Words
Comfort, convenience, and the power to choose†
Scott Robinson has taught 6th through 12th grade sciences and physical education. He has also served as a principal for kindergarten through 12th grade, a special education director, an athletic director, and as superintendent of schools. He is a patient of Leslie Spry, MD, a longtime volunteer and spokesperson for the NKF. Scott lives in York, Neb., with his wife and four children.
Some dialysis patients feel controlled by their condition rather than the other way around. I've met patients who—weighed down by their in-center dialysis schedules—can't choose when they travel, where they go, or how long they stay. They can't cheer on their kids at sporting events or watch their children play instruments at school concerts because they have an appointment with a dialysis machine— an appointment which, quite literally, is a matter of life or death, and that will always take priority.
I have kidney failure, but I am proud to say I am not one of those patients whose condition controls his life. This is thanks to the time and convenience I am afforded by the ability to undergo dialysis treatment in the comfort of my own home.
A Personal Choice
I was diagnosed with end-stage renal disease (ESRD) two years ago. Within a few days of receiving my diagnosis I started in-center hemodialysis. Between the length of time it took me to travel to and from the center and the time spent connected to the unit, one dialysis session took up an entire day of my life.
After a brief time on dialysis in the center, a social worker from my unit approached me and asked if I might be interested in undergoing home hemodialysis in place of in-center treatments. “She must be crazy,” I thought at first, but I asked for more information. I learned all I could and set up a visit with a home hemodialysis nurse.
At first, I was shocked. Everything looked and seemed too good to be true; yet there it was, and it was real. I knew after that first attempt that home dialysis would be the right choice for me.
A “More Normal” Life
Now that I have been on home hemodialysis for nearly two years, I can't imagine going back to in-center treatment. It may be the right choice for some, but home hemodialysis offers me benefits that I couldn't enjoy while tied down to an in-center schedule. I now make my own decisions and live on my own time. I can travel, as long as I bring my dialysis machine in tow. I am already considering a road trip to Florida from my home in York, Neb., this summer, which will be fully possible since I won't need to worry about getting to a specific dialysis center in a specific city at a specific time. I can do dialysis wherever I am, at a time that is convenient for me.
The ability to be there for my kids and watch them grow up is the ultimate freedom that home hemodialysis allows me.
I can be my sons' biggest fans at their high school athletic events and listen to my daughter play in her elementary school music concerts. To me, the ability to be there for my kids and watch them grow up is the ultimate freedom that home hemodialysis allows me.
When I dialyze at home, my kids frequently come in for homework help, to watch a baseball game, or to simply chat about the events of the day. They have seen me on dialysis so many times that it's now as common as having dinner together. I personally think this is positive for their development and our relationship. They see me for what I am—a person on dialysis—instead of a disabled person. I hope they can carry that distinction with them for the remainder of their lives, and believe they will, thanks to my ability to do treatment at home.
While it may not be the best choice for everyone, home hemodialysis has proven to be the best treatment choice for me. The National Kidney Foundation's website, www.kidney.org, offers a great deal of information about different types of dialysis treatments, providing guidance to those who are undecided about what type of treatment is right for them. The foundation encourages people to learn all that they can about treatment options.
A Hopeful Future
Eventually, I want to return to my job as a science teacher. I also would like to coach high school sports. When I decide I am ready, the fact that I am a dialysis patient will not be a limiting factor. I don't know what the future holds for me, but I do know that for now, home hemodialysis is making my life better every day. I have opportunities that I thought were gone as soon as I was diagnosed with kidney failure. I believe my family benefits from my home treatments as a result of my “more normal” life. I hope to return to teaching, so I can share what I know and allow kids and adults the opportunity to see what a person has to offer is not in their disability or restrictions, but their abilities and talents.
I am on dialysis, so everything is not perfect. For right now, however, I think it's pretty darn good.