Part 2 – No Place Like Home
Making the decision to do home hemodialysis with the NxStage System One was the fast part of my journey. It was overcoming some of the hurdles like training, family support, and cannulation that took some more time.
After my conversation with the home training nurse, while still getting treatments in-center, I first talked to my mom about home hemodialysis. She was not initially in favor of it. I think some of it was nerves and whether we could manage the treatments. Then, I also talked to my close friend about it and she was really enthusiastic. She knew home hemodialysis had the potential to improve my quality of life. Quickly, she committed to the training sessions and started the program with me.
The most difficult part of training for me was cannulation. As a dialysis patient, you get used to needles fairly quickly, but it is a completely different story when all of a sudden you are asked to put your own needles in. Aside from learning to put your own needles in, the other issue was the location of my fistula. It was in my upper right arm and, unfortunately, I wasn’t left-handed. I would need to learn to cannulate with my non-dominant hand in order for me to go home. I knew that once I learned to do that, that I could learn to do anything.
I remember telling my training nurse that I wanted to do the needles right away. That way, I would quickly know whether or not home hemodialysis would even be an option for me. It took me two days of training, but then it all clicked and I did it.
When I was in-center, I would usually miss out on celebrating long weekends because of my treatment schedule. After I finished the training program, my first weekend home was Labor Day weekend. We planned a big gathering with family and friends on the river and we were outside all day. I could plan my treatment around it, and I wasn’t missing out on another family event.
I got home at 9:30 that night, set-up my machine, and performed my treatment. I heard that nurse’s voice in my head, "You can get some of that freedom back." It was the first time that I no longer had to plan my whole life around my dialysis treatments.
After just the first few months doing more frequent home hemodialysis, my entire family could see improvements in my life and my health. The more comfortable that I became with home hemodialysis, the more things I was able to do. I traveled to see my family and went out with friends; I was even taken off of a few different medications.
I was on more frequent home hemodialysis for 4 years and continued to experience health and other benefits. I had more control over my schedule; I had the freedom I so desperately wanted when I was getting treatments in-center.
And then I got the call. I was at the top of the deceased donor list.
When I had started dialysis, I had researched information on transplantation and learned about the different types available. Research showed that living donation was the best option but when I considered what that meant, I knew I could never ask anyone to do something like that for me.
I did, however, decide to go through the process to see if I was a candidate for deceased donor transplant. The waiting list is usually 6-7 years and could be as many as 9. One night, I got the call. I was told that it wasn’t going to take much longer, and transplantation could happen at any time and I should prepare myself. I tried not to work myself up. I knew that I could stay at the top of the list for a year or even longer and there were a lot of hurdles in between.
A few weeks later, on a normal Sunday in church, my best friend got up and spoke to the congregation. "Our sister Maria is on dialysis and we have discovered that transplantation may be an option. Transplantation from a living donor is the best possible option for her. She would never ask anyone to do this for her, but I know we all want the best for her so I am opening up the conversation. If it is in your heart, I encourage you to go and get tested to see if you are a match."
I was moved beyond words. At that moment I realized just how lucky I was to be so loved and supported. A true blessing, because I was potentially on my way toward transplantation.