For all those looking for an update, last Friday’s surgery was not as successful as we had hoped. The other vein that the surgeon was hoping to connect to ended up being too deep into the tissue and would not have been advantageous to do that much tissue damage just to hope that it works. Alas, I will have to undergo yet another surgery to put in a graft – this uses some artificial material to make the connection, but it is also more prone to clotting and infection. So much for planning to avoid unnecessary complications… best laid plans, and all that, right?!
I wanted to talk a little bit about kidney function. Typically, the way kidney function is measured is by the estimated glomerular filtration rate – say that 10 times fast – or just try and say it once! We’ll call it eGFR to make things easier. The eGFR is a measure of the rate at which your kidneys can filter your blood and is measured on a scale from 0-100. The higher the number on the scale, the better your kidney function is estimated to be. It is this scale that also determines the stage of kidney failure a person is in and where you’ll hear people say they have X% kidney function. The official measure is an eGFR less than 15 qualifies as “end stage”. This means you have roughly 15% function left in your kidneys. My last blood worked showed my eGFR to be 7. Yep, that’s right a whopping 7% function. If you think of it like a gas tank for a car, I’m essentially running on fumes. Everyone around me is flying around on a full tank of gas, and I’m just sputtering along, hoping to make it. As a reference, my boyfriends’ last check-up showed his eGFR was 98…. So that’s about where a normal healthy adult would be.
It occurred to me recently that I don’t ever remember a time in my life where my kidney function was higher than 40. Admittedly, I don’t know what it was as a child, but I came across some lab results from college that indicated a 38. I have never experienced what it is like to live with fully functioning kidneys. Never. My childhood/teen years make so much more sense now. I always seemed to tire easier than my friends. Gym class was harder, sports were harder, any activity that required physical exertion just seemed so unbelievably challenging to me. I hated it. I felt like it took me longer to recover and I had to work twice as hard just to keep pace with everyone else. But they said I was just lazy. I vividly recall being called slow, lazy, called out for not trying hard enough, not being strong enough. I didn’t know. I didn’t understand then what I understand now. My poor little body trying desperately to keep up with the world around me. To be fair, I’m not certain the adults in my life fully understood either. I think as I came into adulthood, I developed survival mechanisms without even realizing it that helped me to function in the areas I needed. I learned my limits by continuing to push them. I finished my degree, I got promoted (more than once), I bought a house (two!), I had friends and family and I traveled… from one end of the world to the other… and a smattering of places in between. And I was tired. All the time I was tired. I was sort of like a duck. Smooth and graceful on the surface, paddling furiously to stay afloat underneath.
I will never know life as a healthy person knows it. I will never know how it feels to have that “full tank” of gas. The best I will ever get is a half a tank from a donated kidney. Maybe a little more if it’s from a living donor.
It wasn’t until this time last year that I really started to notice that something was off. I was always at a sort of basic level of tired. I was still trying to go at the same pace I always had, but it was getting harder and harder. Until one day I just couldn’t. I literally couldn’t muster the energy to get out of bed. That was a hard day. A hard week. And it’s only declined from there. I have good days and I have bad days. It is very dependent on what I eat (or don’t eat), and what I have done the day or two before. Even still, I try and make myself get up out of bed every day and do something. Do a load of laundry, water the flowers, go to the grocery store, make dinner. Some days that something is taking a shower.
I would give anything for the level of tired that I had even 2 years ago. I’m in the driver’s seat, but I’m low on gas. I know where I need to go, but there are no directions, a few rough instructions, the health equivalent of “turn left at the fork by the second tree with the big rock”. So I sputter along, hoping not to miss the turn and hoping I don’t run out of gas in the middle of nowhere.