I started having swollen hands at one point and I thought it may be my kidneys, so I looked into it a little, my kidney related blood tests went up and down (and back up). I vaguely remember stumbling across the potassium/kidneys thing when I watched a lady online preparing chips for someone with kidney problems – all that faffing about though! More recently I read about protein wasting in kidney problems but that’s as far as I went into it.
I know many of us have, or have had problems with urination, due to the nature of EDS, where our bladders change shape (or correct position) and sensation-wise, we feel as though we have finished urinating but really there is still a residue in the bladder. This can lead to many issues:-
Frequency (because we are not emptying fully in the first place)
Incontinence (because we are not always aware when the bladder is full either)
Bladder infections & subsequently kidney infections (due to the stagnating retained urine)
Backing-up, as you say, to the kidneys (really not good apparently)
So it is important that we make extra sure our bladder is empty, each and every time we urinate. I find, by physically gently applying pressure on my lower abdomen, where my bladder is, after I think I’ve finished, usually brings forth some more urine.
Let’s face it this condition is multi-system, so I think it helps you understand it better (and react to it) if you know the basic functions of each system – so I’m working through it every moment I can, though I think it will take me a lifetime!
Have you looked at mineral deficiencies, as a cause for the kidney failure ?