Dialysis battles

I really start feeling resentful when I have to censor myself so as not to offend. I have some expletives I’d love to unleash right now. I lack the creativity or determination to find suitable synonyms. Alas, I’ll try to be good…

The nephrologist did rounds today. I insisted on having no fluid taken off, not even the 0.6 kg of saline rinse that is always put into my body and always removed. I was adamant that my kidneys are working really, really well at eliminating fluid. Furthermore, I always sweat about 0.5 kg off during treatment, so I did not want the machine pulling off extra fluid that body can take care of naturally.

The doctor told me that 99% of dialysis patients cannot afford to opt out of fluid removal, and that the dialysis staff is not used to this. I tried to calmly respond that this was no excuse for the dialysis staff to not comprehend what I was requesting. I would not let them take off fluid just because they don’t know any better.

One especially obnoxious nurse had previously lectured to me, “You do realize what you’re asking?” This is the same nurse whose “hurry up” routine a while back resulted in me walking out and giving myself a nice alternate afternoon in the Duke Gardens.

A few minutes ago, a tech who wasn’t around for the earlier rounds was alarmed that I was not having fluid taken off. I was and am thoroughly annoyed that I had to explain my situation yet again.

No one here gives any consideration to the fact that I have Polycystic Kidney Disease, that I’m not dying, that I don’t need the machine to pull fluid out of my body, that I need to feel ok during and after treatment because I must work full-time.

There’s a social worker who, in theory, would put forth such consideration, but he has never spoken to me in three months. I don’t know for the life of me what he does here, other than silently follow the doctor around when he does rounds.

The bad news is that having no fluid taken off has not impacted how I feel during treatment whatsoever. Mystery freeze continues. It is NOT chills. It is not “getting cold”. No matter what variations of clothing I wear, no matter whether I use a blanket or not, no matter whether I wear a hat or not, this freeze happens, and it’s barely tolerable.

My creatinine has hit a point of no-return…it’s above 9, so that means I absolutely do need regularly dialysis to filter out waste, even if liquid is still passing through.

The good news is, whereas I started on this shift 3 1/2 months ago getting 3 hours and 45 minutes of dialysis, I now only need 3 hours. This is something.


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