I felt like writing because I haven’t done much in a while, and while admittedly I haven’t written much about this topic in particular because it’s very personal and very scary, let’s talk about the elephant in the room…
My kidneys are failing, and they’re not being slow about it anymore.
I learned that I have Chronic Kidney Disease about six years ago, though with my battles with high blood pressure dating back much farther, I’m sure it was slowly working its magic for a long time. Mine presents itself as something called Polycystic Kidney Disease, which is a genetic disorder that has both of my kidneys being overgrown with cysts. These in turn force them to work harder and grow, so for a truly frightening visual, your average kidney is about the size of a fist, whereas my kidneys have grown to roughly the size of footballs.
Big, disgusting footballs that have done less and less of their job as they endured, until now when they’re finally on the brink of failure. If you really want to be grossed out, here are some pictures … not of mine, but enough to turn your stomach either way!
So where do we go from here???
I’m young-ish … this summer I turned 43, and goddamn it, I still have an awful lot of life that I want to live. My kids are only elementary age, so they’ve still got a decade or more of school left. My wife and I have been married for 16 years, but we’ve been focused on the kids for so long that our own dreams and ambitions have taken a backseat. I still have books that I want to write and memories that I want to make with all of them, and the last thing I want to think about is whether or not kidney failure is going to tear all of that away from me sometime in the next decade.
The first step at this point is starting dialysis. I should be doing that in about a week’s time, as I’m nearing the end of healing from two surgeries that I had this fall to prepare for it – first to repair an umbilical hernia that I’ve had for a long time, and then to install a peritoneal catheter that I’ll use to go through dialysis treatments at home while I sleep at night. The last couple of months have been a long road, particularly when the first surgery failed and kept me in the hospital for a week, but now that those are both behind me, I’m ready to find my new normal and adjust to being a kidney patient on dialysis.
It’s weird because I’m not really scared of the dialysis itself – not yet, anyways. I know about the risks for infections and I know of people who have died on dialysis (not this kind), or from a refusal to do it. At the same time, I see it as a bridge to keep moving forward because right now with my diminishing kidney function, I get more and more fatigued and sleep longer simply because my kidneys aren’t doing everything that they’re supposed to be doing. Truth be told, we probably stretched out starting dialysis a little longer than we should’ve to accommodate the surgeries because it would’ve meant doing hemodialysis instead of peritoneal and I’m really trying to avoid going down that road.
So I’m hopeful that this time a month from now, I’ll find myself with a little more energy and maybe a little more time in my days as I accept letting this machine pickup where my body is failing me. 😉
Beyond that … is the option for a transplant.
That’s admittedly more scary because it’s so uncertain. I know that I’m starting dialysis, but there’s no guarantee to somebody else’s organ. I’m in the process of getting on the waiting list for donations, which could take a couple of years. I’ve also posted on social media about looking for a living donor, but that comes with its own set of mental obstacles because it’s a lot easier for people to say, “I’m praying for you…” than it is to take on the risk of offering up a working kidney of their own.
And just to be clear, I can’t fault anyone for not wanting to donate an organ. The risk isn’t zero, and you have to travel and miss some time from work which many people simply can’t do. In a way, I kind of liken it to when we were going through IVF trying to start our family – it’s just one of those things that is so big that it’s hard for someone on the outside to really understand what you’re going through on a day to day basis. Some may try, and others may trip over their own feet trying, but most people will go back about their day after they post those words of encouragement.
That’s ok, and the kind thoughts are appreciated. It’s hard to say what will be the determining factor for that one person out there to decide, “Yes – I think I want to do this.”
Until then, it’s quite honestly a roller coaster of emotions and right now I’m just trying to focus on enjoying Christmastime with my family and getting ready for this next phase of my life.
I’ve been learning more about diet and nutrition, and trying to get that under control … although holiday snacking definitely makes it more difficult. I’ve been really yearning to exercise, probably mostly because I’m not allowed to do much of it right now. Since November, I’ve taken to walking regularly with Christopher, which has been awesome, except that the weather has really been sucking lately so it’s hit or miss when we actually get to go. The alternative is us using the elliptical and bike in our gym out in the garage, though right now it’s piled with boxes from Christmas decorations, so I probably need to get on that this week…
What comes next is to be foreseen, and I know that tomorrow isn’t promised to any of us, so I’m really working on things I can to do live life more in the moment and maybe not defer so much stuff to maybe eventually someday as we often tend to do.
I definitely would like to start blogging more again. I know that I’ve said this so many times before, but maybe this time it will stick. Who knows?! There are things I’ve decided I want to write less about as I get older – namely things like rants and reviews and even opinions, because let’s be honest, there are a billion different opinions online these days and most of them are pretty terrible!
If I can tell some fun stories, though, and share about the things that I’m still passionate about, those topics we can always use more of, so I’ll see what I can do on that front.
Happy Holidays, from my failing kidneys to yours that hopefully are not! 😀