Tuesday, August 9, 2016

Holy Shit- I'm about to go on the transplant list.

I've been waiting 30 years for this. So even though it's a little scary – the thought of some random doctor cutting into me, moving my big ugly cyst-filled kidney aside and connecting a family, friend or total stranger's pretty pink kidney into me – I am happy. I've been feeling the pain of this kidney disease and these cysts growing and bursting inside of me for about 15 years. I'm ready to feel good.

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.)

 https://pkdcure.org
 http://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/basics/definition/con-20028831

14 comments:

  1. I love you Kelly, and like what you wrote. Well done, my friend.

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  2. I think you write really well and I respect and like people that talk about challenges and fears in life, but you already knew I respect and like you. Looking forward to staying informed during this crazy journey. Good luck, buddy. Love you.

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  3. I'm happy you've finally got some answers. I would love to talk to you about this as I've been some different symptoms and they don't do anything to give me answers. It's always it's probably Fibro. Hope all goes well for you. You're in my thoughts❤️ AQ

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  4. Your outlook is rad! I wish you all the best. Online shit is the worst and it can freak you out so much.

    If y'all want a casserole while you are out of commission, I can drop one by Lex's work. One less thing to worry about.

    Keep us posted!

    Jill

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  5. I am so happy that you will be healed. I pray that your body accepts and that the transition into a healthy new body meets your healthy mindset. Bless you lovely friend.

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  6. It sounds like a very hard thing to go through. If you want to talk to someone who had a kidney transplant, I have a friend who got a kidney from his brother. He's a super nice and very funny guy. It was am amazing transition in his health and even his hair after he had his new kidney. Let me know if you want to talk to him. Take care Kelly. Jackie Maurer

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  7. Awesome. May the force be with you. Donor soon!

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  8. I had no idea you had kidney disease Kelly. Thst sux big time, I pray that you will find a donor

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  9. My kidneys have been weak for as long as I can remember. I am 53 now and I am not sure what is kidney and what is menopause. I ended up in April with a sinus infection with fever that turned into kidney shut down within two days - I had no idea that my kidneys were even an issue because the classic symptoms were not there. I am curious to see what information you dig up about symptoms. In the meantime, you and your family are in my prayers. It's a much better time to get a transplant than 15 years ago. Your attitude is awesome and I know you are surrounded with love and support. Thanks so much for sharing

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  11. Love you TONS MS. Pinky & am here to support you anyway I can!! #GOMO4KELLY

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