Wednesday, August 10, 2016

08/10/16 Holy Fuckballs, I'm on the list.

Okay, it's official. My name is on the "I need a kidney, can I have yours?" list.
This is a good thing. This is a scary thing. This is a fucking awkward thing.
I think somewhere in the back of my twisted mind was the dream that looked like this:  A setting like a Jerry Lewis Telethon, but all about me. Watching it on TV with all the celebrity operators answering phones ringing off the hook with promises of live kidney donors. I watch as the numbers went up and up full of potential donors. I would also like to add there was glitter and unicorns, and maybe dancing girls just for shits and giggles. Turns out, that dream, was total horse shit.

Once you find out you're on the list, you then realize you now have to ask your family, friends, and potentially total strangers to give you one of their kidneys. 
There is no fucking easy way to ask for that. I sent an awkward group email to both sides of my family. I posted on Facebook. The Big Ask, The Big Give.
So now I wait. That dream of a glittery telethon has been replaced with reality.

It's a total fucking mind trip. 

That's why I write about this. Because every fucking feeling hit me at once.
Which I believe is probably true for anyone who goes through this.

It's a glimmer of hope, that each day I'm closer to that perfect match.

I'm not gonna lie. There's also that feeling of disappointment when somebody you thought might step up, has second thoughts. 

But I can't be upset at anybody for that. This is a big fucking deal. I was told by both my brother and a friend (who both received kidneys from live donors, who incidentally are all doing great) that I couldn't have expectations about people signing up. That 90% of folks who say they'll do it, most likely won't. And that's okay. 

The logical side of me understands this. I don't want people to feel guilty, bad or that they're letting me down. I totally understand why people wouldn't feel comfortable doing it.

The rad thing is that there are going to be people that go to the link I posted below, and fill out the form to see if they are a match. There are already people who have done it on their own. They asked for the link and signed up right away. I only know this because they told me they did. (Thank You.) 

This is going to be an emotional battle. But at least I'm on the list. That's a very good thing. Asking for help is really hard. Asking for a kidney...that's really fucking hard.

One good thing about testing to see if you might be a donor, is that it's totally   confidential and comes with no obligations. I won't know if you did or did not fill out the questionnaire unless you tell me.

I believe it's best for me to leave the link here, and on Facebook and stop asking. I think it's the best way for least for now. 

To sign up to see  if you might be a match go to:
It will ask for my name : Kelly van den Berghe
My Birthdate : 10/23/64 
This is the, hey I got a question about being a live donor phone number- 650-498-8382

This is not a binding contract- and totally confidential. It just figures out if you are a good match. 
I want to give big loves to all who have already signed up. I feel truly blessed and thankful. Lover you. XOXOXOXOXOXOXOXOX


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 get the fuck over it.)