I was asked to share my adventure in training with NxStage for home dialysis in this forum. I hope it encourages others to consider home hemo. First Day of Training
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by Sally on 05-14-2010 at 12:46 AM (396 Views)
I don’t want to start this right out with training because so much led up to the decision to dialyze at home. I am sure there are people out there who are struggling with the same things I struggled with. I am lucky in that I knew for several years that I would eventually have to begin dialysis. As a teacher, the way I approach things is to learn everything I can about them and I approached dialysis the same way. I read everything I could get my hands on about kidney disease and dialysis. It didn’t really come close to preparing me for the reality, but I was better prepared than many who are thrown into dialysis without warning.
I had a graft put in my left forearm - my nephrologist at the time gave me no choice - he glanced at my arm and pronounced my veins too small for a fistula and that was that. Of course, when I began reading I realized that a fistula would be better, but it was too late. Anyway, I was able to travel to Greece in 2005 to a little vacation cottage my husband and I have in the little village where he was born. It was a bittersweet month because I knew that when I came home I would have to begin dialysis and that would be the end of seeing Greece again.
I came home and began dialysis immediately. I was surprised that it wasn’t as terrible as I had anticipated. Certainly not fun, but tolerable. When I had calmed done some I joined an online support group and really began to get the scoop on proper dialysis. I heard about fistulas and decided I would try to get one when my graft gave out. I heard about buttonholes and was shocked to learn that some people self-cannulated. I mean, why would anyone want to do that? (Don’t you just love that term - “self-cannulation,” “I self-cannulate.” It sounds like something you should do behind closed doors.) Anyway, dialysis went along with lots of cramps and steep blood pressure drops, but I was able to continue working.
After three years my graft gave out and the surgeon did a vein transposition in my left upper arm to create a fistula. In the meantime, I had a chest cath. The extreme blood pressure drops I was experiencing caused a section of my bowel to die and perforate and I had major surgery. Right after that I began having severe back pain. I had learned about in-center nocturnal and decided to try it. I transferred from a Fresenius clinic to DaVita. I loved nocturnal, I felt so much better and had more energy, but the pain was getting worse. It went on for months until at last they diagnosed osteomyelitis of my spine. The infection was either caused by my chest cath or by the bowel surgery. It was never determined which. I went through a year of hell getting over the infection. During that year the nocturnal unit was closed and I was transferred to another DaVita clinic. I have been dialyzing there ever since. I also insisted on dialyzing for five hours because I am a firm believer in “more is better.” I finally got my fistula and it is a beauty. So huge and strong that I knew I could self-cannulate easily and I wanted buttonholes. How empowering it was to be able to take over that part of my treatment!
I never considered home dialysis in any serious way because my husband has always been squeamish about medical problems and I thought bringing dialysis home would be intrusive and difficult for him to handle. I have always protected him from any worries he might have about illness. I even went through quintuple bypass surgery alone because I didn’t want to worry him! Anyway, I was wrong. I totally underestimated his ability to handle a medical crisis - during my year’s illness he was a rock. He took over everything - the washing, the cleaning, shopping, cooking, etc. I saw a side of him I never knew existed. So, we were talking about how much I wanted to go back to visit Greece and we talked about NxStage and the possibility that it will one day be supported in Europe. He asked why I didn’t go for it and I said it was because I didn’t think he would want to be involved with it. Well, he immediately urged me to try it and even promised to go for training with me!
I contacted DaVita in February and they told me I could start training in April, but there was a delay and the waiting was so hard. Once the decision was made I could hardly wait to begin. Finally, today I went in for my first training. My husband is in Greece and won’t be back for a few months, but a friend has agreed to help me in the meantime. I was excited, but apprehensive about today. I had read another blog somewhere that described the trainers in a fierce way. They sounded argumentative, arbitrary, and grumpy and I was worried about that. The trainers today were wonderful. The DaVita trainer is still being trained herself and another trainer, a nephrology nurse originally from South Africa, is helping her train me. They were terrific and went slowly so I didn’t feel overwhelmed. Tomorrow they will show my partner, Bert, and I how to set up the machine. I am looking forward to it.