State of the Kidneys

Originally Posted October 16, 2010

So, to clarify and answer questions, here’s a long, wordy explanation of where I am in the Kidney Adventure.

After the big scariness of August, things have returned to “normal” for the most part. My creatinine came back down some from the big spike that we were seeing (creatinine = bad) but has not gone down to what it was before. So this leaves my function around 34%. But this is good news, considering that for a while it looked to be under 20%.   

It now looks like we have a sort of pattern. Six to nine months of nothing exciting, then about 2 weeks of some strange kidney-related illness and the function drops.  We’re pretty much giving up the search for a reason and we’re sticking to damage control now. No explanation for these little flare-ups.  We’re in uncharted territory now, since I don’t fit any of the usual reasons for kidney failure and there’s not a lot of research on people like me.

The plan from here is to change my diet to a “renal diet” to try to preserve function. It restricts sodium, cholesterol, protein, phosphorous (dairy, cokes), and potassium (potatoes, bananas…).  I don’t have to restrict fluids yet, but I am going to be a real pain to feed at family functions. However, I have not had much appetite lately anyway, especially for meats. (My body’s way to help me with the diet, apparently.) At least I have lost some weight! (Bright side, right?) I’ll be meeting with a nutritionist soon to make sure I can still get all I need to get from what I do eat.

As for other treatment, right now we’re looking at trying an ACE inhibitor again (different BP drug). Studies show that sometimes it can slow the damage that the rogue protein levels cause, which could lead to more years of stability. (Though almost all the studies are on diabetes-related kidney failure.) The catch is that it will make my creatinine go up a little, and I’m in the Danger Zone already. Then there’s a bit of a chance it could make things MUCH worse. So, I’m supposed to sleep on it and decide whether or not to give it a try. (HOW AM I QUALIFIED TO MAKE THIS DECISION?!?)

Anyway, when function gets 10-15% worse (and all the doctors believe it will), I will be getting a preemptive transplant, which means I have to line up a donor to avoid going on The List.  This probably won’t be for a few years (fingers crossed.) If this plan works, I won’t have to do dialysis at all. This is best-case scenario. I’m really trying not to think about alternate scenarios right now because I don’t like them.

Ok, so this has been really serious.  There’s not a really fun way to say all this stuff. (Maybe I could sing it?). It all sounds a little negative, so I should assure you I’m fine. It’s a little bit of a relief to quit searching for a cause with no success. Meanwhile, I’ve been camping and partying and traveling and teaching and life is good.  I do think this has given me a reason to be more optimistic about things. There are scarier things than finances, or dirty laundry, or 5^th graders, or any of the other things that had been stressing me out. And honestly, I feel like I have dodged the scarier things, too. I have a lot to be thankful for, and while I am disappointed that I’m not getting a handicap parking tag out of this, I am doing pretty damn good. 

I went to the doctor, I went to the mountains,

I looked to the children, I drank from the fountains

There's more than one answer to these questions pointing me in a crooked line

And the less I seek my source for some definitive

The closer I am to fine

The closer I am to fine

-Indigo Girls

(Song I like. Not related to the situation exactly, but made sense to me.)