Home hemodialysis let me take charge of my treatment—again

I’ve had kidney disease for half my life, and I have worked hard to do what I needed to in spite of it—graduating high school, college and graduate school, and pursuing my career in education.

Four years into this disease, the summer before my sophomore year of college, I had to start dialysis. After reviewing my treatment options, I chose peritoneal dialysis (PD) because I could still go to school and do my treatments while I slept in my dorm. I did PD for the remainder of my undergraduate career and continued to do so through grad school. During graduate school, not only was I taking classes towards my master of education degree, I was fulfilling my internship and student teaching obligations, all while working part-time on weekends. I had definitely made the right choice for my situation by going with PD.

In 2010, I got the call all dialysis patients dream of—a kidney was available for me! I was thrilled at the thought of being done with dialysis, but it wasn’t meant to be. The transplanted kidney never started working, and due to complications, I had to begin hemodialysis. I started as an in-center patient.

I had heard of home hemodialysis, but I feared it. I was comfortable with my techs and nurses in the center taking care of my machine, me and my medications. Most of all, I feared sticking myself. I couldn’t even look when the nurses and techs put my needles in. Also, even though I had done my own treatment on PD, I was intimidated by the hemodialysis machine—it was so large and had so many lines. I was afraid I would mess it all up!

After a few years of in-center hemo, I decided I wanted more control of my life again so I decided to consider home hemo. My training nurse, Bill, put my mind at ease immediately. He showed me the home hemo machine, which is much smaller than the in-center machines. It wasn’t so scary! Once Bill explained everything home hemodialysis would require, showing me information about how it could be better for my overall health than in-center treatment, I decided to switch. I wanted to have more energy, be able to have less fluid and dietary restrictions, and be on fewer medications.

Training for home hemodialysis happened five days a week for about a month. At my first session, in March 2013, Bill offered to start the “buttonholes” for me. Buttonholes are tracks to put the needles in the same spot every treatment. Since I would have to stick myself every day at home, I decided to do it myself from day one. I couldn’t believe how easy it was! It actually hurt less than when a nurse or tech would do it in-center.

Once training was done, and I was home, I won’t lie—I was scared. While training, I had Bill right there to help me whenever an alarm went off and to answer any questions I had. Now, I had to call if there was a problem and troubleshoot it myself with no “professional” back-up. During those first few weeks, as I was making the dialysis solution, there were a few nights when I found myself on the phone with tech support while alarms blared in the background. Everyone I spoke to was very helpful and walked me through how to fix the problems. After a month or so, everything began to run smoothly.

I have now been on home hemo for over three years. Since I made the switch, I feel so much better. My former techs and nurses comment on how much better I look when I go for my monthly visits in the home clinic. I have been off blood pressure medications for over a year, and I have a lot more energy than when I received dialysis in-center. I no longer have “dialysis fatigue” where all I want to do is sleep when I get done. Also, I can schedule my treatment for when it’s convenient each day! My clearance numbers are perfect so I dialyze only five days a week. This came in handy when I worked as a long-term substitute teacher. I am now looking for a permanent teaching position, and it’s all thanks to home hemo that I can go back to living the best life I can while on hemodialysis! 

Stephanie Shabanowitz is a teacher and a member of the American Kidney Fund Advocacy Network.

Posted: | Author: Stephanie Shabanowitz

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