Category: Donor stuff

Actual Conversation at Casa de Wellman- fundraiser edition

~ curiousreadings

So, there hasn’t been a whole lot of movement transplant wise for awhile- until last night.

Mom- The case has been forwarded to the Mayo for consideration, going to have to come up with some hefty money, though.

Me- I got it! We could sell a kidney!

Pause develops

Me- Or, you know, maybe that wouldn’t work so much.

Mom- ya think?!

 

I should never talk to my mother when I’ve been drinking. And… I’m going to miss drinking. And asking for the dessert tray. But really, it’s past time I got back to good behavior, and what better reason?

Hopeful happy dancing has begun! Which is great cause it burns calories!

Random Musings- Where have you BEEN?

~ curiousreadings

Let me splain. No, there is too much, let me sum up.

Don’t you hate it when that thing that you thought was just your stupid screwed up sinuses (believe me, it’s crazy straws shooting spitwads instead of actual conduits moving matter in there) and allergies becomes a deep chest cold?

Yeah, me too.

So that’s why I croak when I talk right now and I spent Monday doing this-

f8e6af5a-ec5b-428e-bbe9-7bba70d8211a

Bonus points to whoever can name which movie that was.

 

When NOT doing that, I’ve revisited old favorite episodes of South Park (Make Love, Not Warcraft), and watching Adam Ruins Everything.

I’m not going to lie, I’m borderline obsessed with this show. It’s entertaining, educational, cites ALL it’s sources, and it gives me something to think about when I can’t really muster the energy to be doing something. Check it out, the first two seasons are free on Netflix right now.

Got a new Rick’s Chainmail sales event coming up on Saturday- the Edgewood Celtic Festival that Siin talked me into trying out. Booth fee was nice and low, weather will hopefully cooperate, and even have some awesome new stock, so that’ll be fun.

Finally got a call from donor coordinator- now just waiting for my card to come in to pay for all the fun fluid sampling they get to do of me. (This part will get a little graphic, but I’ll keep it to just this paragraph if you want to skip it.) Apparently one of the main concerns is my urine output- they want to make sure I already have good output so being down a kidney isn’t really an issue. I had to wheeze/laugh at that- as a lady in her 40s sans uterus, telling me my overall output may reduce by 25% is nothing but music to my ears. That’s like 3 less bathroom trips a day! Sign. Me. Up.

After they determine if I can in fact be a donor, we can immediately jump into cross match (to tell if my kidney will work for the recipient). This is pretty exciting stuff- while I’m not opposed to a paired donor situation, it would take longer.

I am being a little more liberal with calories while I’m not feeling great- but still trying to get 60 minutes of light activity a day and staying under 1600. I’m absolutely 100% not starving in any way, I want to be sure to add. I’m just realizing that no, I don’t really NEED that 4th taco. Or that 3rd slice of pizza. Or that cup of hot chocolate (which, did you know, tastes like crap without Bailey’s and whipped cream? Yeah, I know! I was shocked too).

Also clearing the decks and getting into the right mental mindset for NaNoWriMo. I know which concept I want to go with, and I’m trying really really hard not to psych myself up or out- Yes, I’ve done it for the past three years and finished every time. But every year has also been just a little bit different. 50,000 words in 30 days is a lot, and the concept isn’t just a follow up novel to the one before. I’d really like to say I’ll be able to keep up the pace and that I’ll get to start 2019 with another new book out. But I can’t. What I can say is I’m going to do my best.

TL:DR- OMG lots going on, donor stuff, book stuff, chainmail stuff, life stuff, stuff stuff.

I can’t believe this isn’t an ordinary ramble.

~ curiousreadings

If you’re hoping to read about banter around the house or that I’m ripping into some customer service utter fail or a great recipe, this is going to be a disappointing as hell post. Sorry bout that. But this has been on my mind for awhile and I wanted to get it out there.

For a lot of my life, my relationship with food hasn’t been great. Only eating once a day or eating till I was absolutely stuffed or eating out of boredom or for comfort. And of course, eating the absolute worst things you could think of eating because they are just plain tasty.

As I’m working hard to drop the weight prior to the transplant, and thinking about my own long term health, it’s suddenly becoming easy to stick to the under 1200 a day thing. I’m watching portion size, counting the calories, logging them and my activity- and it’s getting easier.

It’s easier to bypass the fries without feeling punished. And yeah, sometimes I have a couple and I can stop without eating ALL of them. Food isn’t my all consuming preoccupation anymore- and it just feels like a relief. Knowing that this attitude will keep me from rebounding and putting the weight back on, that I’m one step closer to the all important lifestyle change that will keep me healthier… well, it’s a really encouraging feeling.

Except for the fact that I’m always cold now. That sucks. I truly don’t know how skinny people survive.

And now, because I can’t leave you without ANY smiles-

Actual text conversation with the Wellmans (in which you may do all the groaning you like)-

Rick: https://www.georgetakei.com/viral-video-dog-watered-plants-2608166338.html
Ari: I think he mist the point
Rick: That watered down
Ari: Hey hey hey… when it rains, it pours
Rick: At least there no pooling
Ari: I’m not sure how there isn’t, considering how you’re showering these down on me
Rick: When I’m hot I’m hot
Ari: maybe an ice bucket challenge would cool you off
Rick: That well just drown me
Ari: I’d bet on you to float if it was a sink or swim situation
Rick: The pressure high down on the bottom of the ocean
Ari: gonna need your scuba gear
Rick: You blew up my sub
Ari: But I had to! You sank my battleship!

 

 

Random Ramble- Chaos, rawr.

~ curiousreadings

So.. I haven’t been keeping this as up to date as I’d like to. I’m going through a huge time of personal change and upheaval, which is apparently sparking all kinds of creativity on a lot of levels I don’t typically see. It’s kind of like my brain doesn’t shut down anymore, it just keeps kicking into higher and higher gears. Sounds great, but it’s a bitch for my sleep cycle.

Why Ari, what is it you’re doing?

So glad you asked, nonexistent prompter! I’m consuming under 1200 calories a day, still off soda and booze, 30 minutes of recorded activity, 60 minutes of hard cardio, 60 minutes of movement meditation a day. I’m down a tshirt size and feeling pretty good about hitting the necessary goal to cough up a kidney by the time we get through all the initial stuff.

Because that’s not enough change, I’ve found a bunch of our processes I can streamline and automate (that’s sexy in datageekspeak, trust me).

The domicile is getting a needed facelift (more on that as it concludes- I have a whole post for the dining room we never really used as a dining room turning into the Den of Geek).

In short, I’m changing, my world is changing, and that’s… well, awesome, but also freakin scary as hell. And tiring as hell.

So today was really a great day- because it proved that in the middle of all this chaos in my life, the constant is the people that believe in me and support me. That want to show me how much they appreciate me to the point of devising elaborate schemes to be sure that I’m super surprised. Like repeatedly.

While I cherish and value that recognition, I find what brought me to tears is the realization that no matter how much is changing in my world and how violently different things can seem, I’ve got people who care enough to trick me. Twice.

Finding my people took a very long time. Having their (kind of knowing, but not the whole shape of things) support means the world to me.

 

Living Donor Champions or Dialing for Kidneys

~ curiousreadings

One of the more… I don’t know whether to call it ghoulish or gruesome or just plain disconcerting… portion of the seminar was when the grim German/Austrian accented social worker brought up ways to procure yourself a living donor kidney.

Every one of these examples was followed up by the holy grail – “And they got a kidney!”

  1. Discussions over holiday dinners
  2. Car decals
  3. Facebook pleas
  4. Networking within your church
  5. Taking out billboards

 

You remember the Tom Cruise role in Magnolia? Or if you’ve ever seen a really gifted MLM pitchman… this is what our dour social worker became for about ten minutes as she listed all these absolutely true stories of how people had hustled themselves up a kidney.

It was surreal in a way I’ll never be able to put fully into words, and I have to laugh about it, or I might cry.

So… what makes you decide to give up a literal body part?

~ curiousreadings

I’ve meandered back and forth on this, tell or don’t tell.. write or don’t write… and it was yesterday that made up my mind for me. I was thinking about how daunting the process could look from the outside, and how much I wished there was a no nonsense, no bullshit person who had been through it that I could talk to.

I’m on the path to being a living organ donor. I need to lose weight (no one had to directly tell me this, I already knew before yesterday’s very direct and pointed looks by the lecturer) and I need to go through what feels like a crapload of hoops (though I freely acknowledge that the recipient is going through a whole lot more and way more invasive ones).

There are no guarantees, I have no timelines at this point. I have done my research, days and weeks worth of it, and yesterday I attended the first orientation.

It was held in one of those overly bright auditoriums with a way too long PowerPoint (91 freakin slides), an overly cheerful nurse coordinator, and a dour social worker. Most of the other attendees had the perfectly blank faces of dolls, and one guy I could swear fell asleep during the two and a half hours we listened.

There are 100,000 people on the UNOS list for a kidney right now. It takes between four and six years to get a deceased donated kidney that will live for roughly ten years. A living donated kidney survives longer, for about fifteen. There are plenty of folks who beat the odds one way or another- I’m just passing on the numbers I was given. For a living donor, yes, it’s major surgery, with recovery time of 3 to 4 weeks with the recipient’s insurance covering costs. It can be done via a laparoscopic procedure, so minimal invasion and scarring.

This is an intensely personal and difficult decision. I’m not trying to tell anyone else how to make it, I’m only telling you how I made it- and I don’t feel particularly noble or whatever it is I’m guess I’m supposed to feel. The only word I have for what I’m feeling since yesterday is determined.

I was really young, probably too young, when events unfolded in such a way to bleakly demonstrate the difference between quality of life and quantity of life. Also, me being apparently ahead of the curve, I got to go through a midlife upheaval really quite early in the scheme of things.

Why do I bring this up? Well, for one, I became pretty firm in the belief that one has to exude all the kindness and joy and humor and care and love they can if one hopes to find it out in the world. And I believe that just surviving isn’t enough of a reason to stick around. We aren’t here to survive… we’re here to live.

If you spend enough time with folks who have dialysis as a part of their day to day lives- the difference is real clear real quick.

Stay tuned for next time- Living Donor Champions or Dialing for Kidneys!