When I went to the hospital today, I spoke to this lady about learning to do dialysis at home. It was kinda funny to me because I had asked to speak to her at around 7:45 and by 7:50- something she was already there. After giving me a bunch of info she rushed one of the technicians over to speak to me about coming to my house for 15 minutes or so to check out my plumbing and such to make sure my house was compatible. She also wanted me to start the training tomorrow! The whole thing was kind of annoying, and it reminded me why I didn’t do this before.
I understand that doing dialysis at home is supposed to be better for me and my health (next to a transplant of course), but I really hate the way that home hemodialysis department works. I’m convinced that they work on some sort of commission basis or something because I can’t imagine why else they would pressure you and harass you so much.
I don’t know what to do. As I mentioned, I know it’s supposed to be better for me, but at the same time I hate the idea of having a huge dialysis machine in my house. Well, it certainly won’t be huge, but it also isn’t the portable one that I wrote about earlier. I asked the home hemo lady about the portable machines and she said that a doctor by the name of Dr. Chan is working towards getting those machines here, but we don’t have them yet.
As much as I remain strong 90% of the time, the other 10% of the time I’m just like….crap, why me? It’s not like I wish what I go through upon anyone else, but like ever other normal human being, I just want to be able to wake up everyday, go to school and/or go to work, do my thing, doo what I want when I want….and I just can’t. And this isn’t just something that will “go away” unless someone finds a cure for Lupus in my lifetime.
I don’t know how long it’ll be now before I’ll get a transplant, but I can’t go on with this going to the hospital 3 times a week thing. The other people in that hospital unit are all older. Not to say that they don’t have anything to live for but I’m supposed to bee at an age where I’m free to do things…travel freely, get my life on track, etc. I just feel like I’m stuck. Like my body wants to do stuff, but my feel are held down in a block of cement.
So I have to make a decision about home hemo. My Dad is all for it…but I’m having trouble reading my Mom. I just wish I didn’t have to make this decision at all. I’m so thankful for the days when I may have had Lupus but I wasn’t in complete renal failure. Now that I am….man has it ever turned my entire life upside down.
This stinks big time.