It's at this point where any knowledge of fistulas I have runs out. I have to trust these people because they've stuck a lot more fistulas than I have, and I have to assume they know what they're doing or HOLY SHIT.....so I did. And I wish I did't, because my gut was telling me this wasn't right.
I got through the hour of UF and successfully pulled off 2 kg right away, so that was great, but 27 minutes after we started actual dialysis (cleaning), I was lying down (because my bp was low...weird right?) and sleeping (see previous post) when this searing pain started in my fistula. It turns out that, somehow, it infiltrated (needle through fistula) and we had to stop the run entirely for the day. My arm blows up like a tennis ball is tucked under the skin, and it is indescribably painful.
I think the worst thing for me in that moment is how angry I was at myself for not trusting my gut. I'm confident that if I would have asked/demanded that she move the janky needle, then this would not have happened. And they were all so blasé about it (by they I mean the clinic staff). I know that they see this shit all the time, but I haven't. I've infiltrated my fistula one other time, and that was my own fault because I had a cramp in my foot and stood up (stupid, stupid mistake), but I was literally just lying there, perfectly still, sleeping, and it STILL happened!!! What am I supposed to do with that? "Pray" that it doesn't happen again? That's not fucking good enough. I'm pissed. I'm pissed because of how little I know about hemodialysis. Or about accesses. I asked right away for them to start training me on self-cannulating (sticking myself) because I need to suck back some control in this whole never-ending nightmare I find myself in.
And it feels like there is this weird dynamic with clinic staff when you start asking questions. Immediately, there is a sense of defensiveness that I sense. I realized today that the nurse in clinic (there's only one) has no idea how to run the machines. Now maybe that's not her job, but it sure as hell seems like something she should know. I mean, there are only 3 staff members at my particular clinic (it's 10 chairs)...there's the nurse and 2 techs. And when you have a new tech, and a tech at lunch, and a nurse who doesn't know anything technical, well.....it feels scary.
Surely this can't be how it's meant to be. I just wonder how many things will happen that I'll just "have to get used to" or accept without a reason. I'm not good at that, but I think it'll save my life in this case.
This is what it looks like a few hours after I left the clinic. I've been icing it, but I think I need to switch to heat at some point (although I'm to sure when) to help the pooled blood re-absorb. Now, because of this, I have to go to a DIFFERENT clinic tomorrow morning at 7:30am and do dialysis since I didn't really get any today. As a dialysis patient who has to be connected to this machine nearly every other day, any extra sessions feel like they're stealing time away from me. My nephrologist added another blood pressure medication yesterday, but one of the side effects of it is edema (fairly common side effect with BP meds that I've avoided thus far) so now I'm worried that this extra fluid is something I'm going to have to deal with in order to have lower blood pressure.
I'll have spent ever day this week doing something kidney related, and I just want a break where the sun is shining and I have energy and am at a reasonable weight.
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