Prompted: Day 08 — Something you hope you never have to do.

I hope I never have to go on dialysis.

Having a disease that doesn't do much of anything is weird. Granted, I'm HAPPY that my PKD is not up to anything lately, but it's a strange place to be.  Two years ago, I got the reality check of "if you do not do something drastically different, you're going to end up needing a transplant. It won't be today, or tomorrow, and it might not be for 20 years, but it will happen."  So, with that as one of my primary motivations, I've done a passable job of trying to get my act together.  I've lost weight and gotten active.  Some of my vices haven't made much progress, but as of my last visit with my nephrologist, I'm 110% better than I was.  And now? My evaluation is "well, you could still end up needing a transplant. This is a funny disease, and there's just not any way to tell if it is going to get you or not, but you're doing everything you should be. Have a great day!"

Soooo... lose weight. Don't have kids. Don't eat meat as much as I'd like to, and it MIGHT do some good. Or it might not.  The good news is, if I ever did need a transplant, I'm in way better shape now which makes me a better candidate.  My system is healthier, my muscles are stronger, my kidneys are easier to get to (I can feel them when I poke! It's creepy!).  I have every reason to believe that things are better than they were. Where I was having cysts rupture every month or so, that's tapered way down and seems to have more to do with when I get worked up and my blood pressure fluctuates as a result than to do with the fact that I'm not a healthy person.  It's good.  Really good, even.  Where a few years ago my physician was trying to figure out what clinical trials he could get me into, now he's not worried about it, because I'm at 100% renal function with no failure evident whatsoever.  That could change, though, and for no reason other than it's an unpredictable disease and sometimes it just decides to progress and usually when you're in middle age... and hey, look! I'm kinda sorta there now, aren't I?

I know, logically, that my life with this disease is not going to be the same as my mom's was. She didn't know she had it until renal failure was already so far along that it couldn't be undone, and she still had another 10 years after that, despite being in poor health to start with. Despite having had two kids. Despite being over 100 lbs overweight... so I have no real reason to be afraid that I'm going to end up where she did.  I'm being monitored annually.  If I even start declining a little bit, there are things that could be done to make it slower, make it better.  Even in a worst-case scenario world, dialysis technology has gotten better, and it's not nearly as bad as it was 10 years ago... but the fear is still there.  I do not want to be tethered to a clinic or a machine that I rely on to stay alive.  I don't want to actually take in all of the offers of "sure, you can have my kidney."  And really, right now, I don't have to worry about those things because all of my data says that I am just as healthy right now as anybody without the same condition but the fear is still there.


This post is part of the 30 Days of Truth Challenge .