I still remember March 3, 2012. It was the day my doctor told me I had kidney failure and that I needed to start dialysis immediately. I didn’t even know what dialysis was. I do not remember being given any options except that if I didn’t receive dialysis treatment, I would die.
After six months of receiving in-center dialysis, I expected I would get used to it and start to feel better. But none of that happened. Instead I was tired all the time, constantly struggling to catch my breath and feeling worse. I remember having to sit on the bottom step of my building for 30 minutes before I could even begin to go up to my apartment on the third floor. I became very depressed with my life. I hadn’t seen my grandchildren for over eight months because I didn’t want them to see me so weak. I missed celebrating holidays with my family just because I was too tired to even stand up.
After about a year in-center, one day I went online and started researching more about dialysis. All of a sudden I came across a video of a young woman talking about how she did her own treatments at home, eventually getting her life back and doing the things she used to do. I remember jumping out of my seat thinking, “This is it, this is what I want!”
I started training with home hemodialysis in April 2013. I went to a training class for four weeks. The nurses spent all day by my side, teaching me all I needed to know to do my own treatments safely at home. There was a lot to learn, but by the end of the training, I had already noticed the difference. When I got home, I could quickly and easily walk up the stairs. I snapped out of feeling like I was in a really dark place. My thoughts were much clearer, my recovery time was faster and I was in control of my treatment. My family recognized I came “back to life” and I felt that my goals were attainable again.
More patients should have the chance to experience improvements in care like I did with home hemodialysis. Unfortunately, many patients do not have the option to do home dialysis. Only about one in four centers offer home hemodialysis, in part because Medicare’s payment for training patients to dialyze at home only covers a small fraction of what it costs providers to offer the service.
The Centers for Medicare and Medicaid Services (CMS) bases payment for training on only 1 ½ hours of additional RN time per treatment. I can tell you that when I was in-center, the nurse was with me only at the start and end of treatment but in home training, my nurse was with me throughout the day. Medicare needs to make their training payment fit the reality of the RN investment in training. That is the only way patients will get fair access to home hemodialysis. Until that happens, it remains access denied.