There is is so much information out there about Polycystic Kidney Disease (PKD). I know how and what the kidney does and how it works. I know which numbers on my lab work to look at so that I know where my kidney function is at. So when I got the word that my kidney function (EFR – estimated filtration rate) was within the range of 15-30 I knew that meant my kidney function was severely reduced (under 15 is failure). My lowest level was 18 and I was also at 20 twice, which is the prerequisite for being referred to a transplant team.
Now look, I'm not here to give you a lesson on PKD. Like I said, there's a lot of info out there if you are interested in looking it up. This blog is a place for you to learn about me – what it's like to freak out, wait, go through the transplant process, and basically what I'm feeling, both mentally and physically, the entire time. So I'm sure this will cover pretty much every emotion I'm feeling, but I usually share that shit on Facebook anyway.
To be honest, I freaked out a little at first. I'd been feeling really tired. I can usually sleep all day on a Sunday. Not kidding at all. My kidneys started feeling different recently...different than my normal cyst pain. It's like a dull headache in your lower back, all the time. So I started Googling failing kidneys, end of life for polycystic kidneys, etc. and I could find nothing the explained how you're supposed to feel. What the fuck?
I went to online groups of other people with PKD, or people who've received transplants, people on dialysis. And not to sound like a big bitch, but most groups sites were total bummer pity parties. There are a shit-ton of people with kidney disease just hoping and waiting for a donor (the average wait time for a kidney from a deceased donor 8-10 years – pretty depressing). So if you haven't already signed up to be an organ donor, DO IT...people need your shit as soon as you're done with it.
I digress...sorry. Anyway, what I needed was a step-by-step 'if you feel this' site. Like, 'call the doctor if you feel like your kidney is going to explode'. If you feel this, don't call the doctor because you just have gas. I did talk to my nephrologist (kidney doctor) about all these different feelings along with the pain I'm used to having. He said it was was most likely kidney growth.
But what about:
- No appetite.
- Peeing is more like tinkling. Or sometimes it's as if I drank 3 beers and finally made it through the bathroom line and pee with such relief that I actually say "ahhhhh" as I start.
- And why does my pee smell?
- I itch all over, like the inside of my skin, My eyeballs even itch – it's maddening.
- I'm so tired but sometimes I wake up every hour.
- Are these things normal? When do I go to the doctor?
I need a 'What to expect when your expecting your kidneys to fail' site, and one that's positive and assures me that I'm going to feel so much better once this happens (cuz I sure feel shitty now).
So I'm going to figure all these things out and share all the funny (sometimes gross) true feelings of what my body goes through during this rejection process until get my new pretty kidney. I don't want pity. This is a good positive thing – it's just happening to a totally neurotic me.
Are ya with me? Feel free to ask me any questions and I will answer the best I can.
(I also swear a lot. It's what I do...so get the fuck over it.)