Sunday, February 26, 2012

Transplant Update: Sophie's Choice

Last week I posted I'd be getting a kidney in April... PSYCH!!  It turns out it is actually going to happen March 15th. Liz and I had requested, demanded even, that it be after April 1st because my parents are scheduled to be in Boston, yep, March 15-April 1 to help my brother and sister-in-law with their second baby. But apparently "medical necessity" for another recipient comes before planned trips- even if it's to help with the birth of a grandchild- and so it has been decreed.

Now we're in the middle our own "Sophie's Choice" on several different plains: Do my parents go to Boston for the baby or stay in Salt Lake City for the transplant? Maybe one can go and one can stay? Okay, which parent goes to Boston and which one stays? No one is willing to choose or say if they have a preference, and can you blame us? Each parent is equally willing, able, and qualified to go or stay. We know it will be fine no matter which goes where, and yet we seem to be stuck in a roundabout, going around in circles unable to exit- or decide.

The pressing uncertainty of how my surgery will go and how the kidney will respond to me is the factor in this equation that can not be determined. My limited knowledge of math prohibits me from making some sort of clever pun here, all I really know I learned from Mean Girls and the mathletes: The limit does not exist. That hardly seems relevant here.

What I do know is that I am a ruiner. I ruin things with my health issues & needs- at least that's what it feels like. Just when everything is fine, wait a time or two and I'll have pulmonary edema or 24+ hours of constant puking or need a kidney transplant right in the middle of everything else that's happening. Leave it to me and my ever constant health needs to put a damper on big occasions and disrupt previously scheduled events.

For now I'm staying in my room or baking a cake in the kitchen while everyone hits possible schedule scenarios back and forth. A kidney is scheduled to happen in 2 & 1/2 weeks and 11 dialysis treatments. I'll be at University Hospital at 5 pm on the 15th, rain or shine, snow or sleet, Mom or Dad.

Wednesday, February 22, 2012



I heard from my transplant coordinator today, my University of Utah Transplant coordinator Heidi, and I've been offered a kidney through the National Kidney Registry Paired Donor Exchange! Actually, I knew about this a few weeks ago but held off making a formal announcement until the compatibility testing came back from all the centers.
My sister Liz and I are part of a kidney chain consisting of 4 pairs at 4 different transplant centers throughout the country. Each center has to run compatibility testing for each potential pair, and each pair has come back as a compatible match in order for the chain to be complete. All four of the centers ran the testing, and all 4 pairs came back compatible so we're having a transplant!

The next step in the kidney chain process is to schedule the surgeries. Because the transplant centers are in 4 different states, it will take between 9 and 10 hours to get the kidney from the donor to the recipient. The centers will work with the donors' schedules and the surgeons' schedules (the recipients have no say, but that's alright. We don't have much to do except dialysis anyway.) to get the transplants all scheduled, but it will be sometime in April. Watch this space for updates on the transplant!

This transplant has been a long time coming. If you read this blog or know me, it's been over 2 years since my last kidney rejected and I've been on dialysis. There is finally some light at the end of the proverbial tunnel. Apparently, this kidney chain is part of some miracle, because I had an antigen in my blood that was making it very hard to find anyone that would match with me. Sometime between when I had my H&I test drawn in December and when I had it drawn in January, something changed and that difficult antigen disappeared, thereby making me compatible with this mystery donor in another state and making it possible to make this small kidney chain.

I've often wondered why it's been taking so long to get things transferred to the IMC program- I've been working on it since last June. Now I understand why, if I had been in the IMC program, this may not have been possible as their standing in the NKR is on hold presently. As much trouble as I've had with the U.'s transplant program, I am grateful that they have worked to participate in this chain and eventually get me a kidney. I found out about the possibility of this on a Saturday, and the next day I sat in church listening to my neighbor play a beautiful rendition of "Be Still My Soul" and I knew at that moment that everything would work out.

To learn more about kidney chains and the National Kidney Registry, visit this link to a really great New York Times article.

Wednesday, February 15, 2012

Just a Girl in a Fantasy World

Last weekend I did something I've never done before, I went to a writing conference. And not just any writing conference, a fantasy fiction writing conference. Anybody who knows me and my preferred reading/writing genre knows this is not really my style or likeness at all. My friend Heather was going with a few friends and invited me as a way of getting me in contact with some local editors so hopefully one of them will take a chance on an unknown kid and give me a job as an editorial assistant (though Heather did tell me later she was really hoping to convert me to fantasy. Not going to happen!).

I'd been preparing myself for Life, The Universe, & Everything (or LTUE) and what I'd come across there. I was expecting a lot of nerds- obviously- and I wasn't disappointed. I was surprised to find a lot of Mormon moms there- some with their small children in tow, which I find annoying- and a few of whom were gushing over my new kate spade. There were a lot of famous writers I'd never heard of, a fully grown woman wearing a cookie monster hat, and plenty of self-aggrandising on the part of the attendees.

For the most part, the panels were useless to me as I don't write nor read fantasy/science fiction. By the end of Friday, after being at the conference in Utah County from 9 am to 7 pm, I found myself missing the comfort and non-judgemental familiarity of Salt Lake County. There were some good moments though, and one panel actually gave me a break through about my own inability to write my book in a pleasing manner.

We were in the "Writing  Excuses" podcast panel, and one of the guests was a writer named Michael Brent Cummings. He spoke briefly about having lost a child, and how that experience has led him to be able to  write about it in a believable manner now that he is out of the situation. That's when I realized why I can't write about my rejected kidney, finishing school on and living with dialysis- I'm still in the middle of the situation. I'm fairly certain I won't be able to write the book until after I've had a successful kidney transplant, and who knows when that's going to be. I guess I need another idea of what to write, and it's not going to be a fantasy novel.

Other good things: The keynote speaker as a guy named James Owens and he was fantastic. It was more of a motivational speech than "Look at how great and successful I've been in my career!" type of deal. What I really took from his address was this: Don't trade what you want most for what you want most at the moment. And I know this has been said a million times before, but he really drove it home with experiences and it seemed more poignant somehow this time around. (break) I went to a local publishers panel and learned the names of some people to contact about jobs in publishing. Just like for writers, local publishers can be a stepping stone to national ones for girls who just want to edit. (break) There was a panel called "Writers on  Writing" with some cool guys (Dan Wells, Tracey Hickman, Dave Wolverton, Lee Modesitt, & Brandon Sanderson) who talked about the triumphs and struggles of being a writer. It was neat to hear a guy who's had a phenomenal writing career talk about how right now is the hardest point of his career. (break) Our hotel basically shared a parking lot with Krispy Kreme so we stopped and got a dozen on our way back from dinner. Chocolate glazed is the best.(break) I got the email address of an editor who might have something for me to do. All I have to do now is email her my resume.

It was an interesting weekend. I did not go to the panel about how to draw a dragon, or the one about creating languages, or the one about injecting romance into your ghost story, but I learned a few things and made a few friends and told a number of people that I did not go to school at UVU so no, I don't know where random building is, but since they all seem to be connected in one long hallway with classrooms on the side, just walk this way or that and you're bound to find what you're looking for. It's always interesting to see how the other half lives.

Tuesday, February 14, 2012

Things I Care Less About than Valentine's Day

  • Any person, show, fragrance, clothing line, marriage containing one or more Kardashian
  • NHL pre, regular, or post season
  • NBA lockouts
  •  The Twilight Saga
  • Any vampire media of any kind
  • Any movie Kristen Stewart is in
  • For that matter, Kristen Stewart
  • Sushi
  • Photos with sayings people post on facebook
  • The feud between Disney Channel stars
  • Rachel Ray
  • Jeremy Lin
  • Jimmer Fredette
  • Anything "Jimmer" related
  • The name "Jimmer"
  • The difference in smartphones
  • The difference in smartphone carriers
  • The difference in smartphone plans
  • The Office
  • MTV programming
  • Major League Baseball* 
  • What someone's eating and whether or not it's "yummy"
  • Words that aren't words (see "Rachel Ray" above)
  • A moon colony run by Newt Gingrich
  • American Idol
  • Political support surveys
  • Ever traveling to India, Africa, Asia, or South America
  • New Years Eve
  • Twitter, who's "tweeting" what, and "trending topics"
  • News programs that use twitter as a reliable source
  • Any Fox News program
  • Chili
  • Recorded telephone solicitations
  • Veganism
  • What your sexual preference is**
  • Matt Barkley
  • People who act like gigantic tools
  • Shows that replace Community
  • and of course, Hugh Jackman***
* Go Sox!
** Just be a good person and I don't care who you love
*** I actually don't have a problem with Hugh Jackman, it's a Scrubs reference

I just don't understand why you need a special day with overpriced tokens of affection to tell someone you love them.

Wednesday, February 1, 2012

Dialysis Anniversary (& Stats!)

Monday, January 30th, 2012, marked two years that I've been on dialysis. I remember this time last year I didn't think I could possibly be on dialysis this time this year, but clearly I was wrong. It's just like I said the first Christmas I was on dialysis, "If I'm on dialysis next Christmas, I'll kill myself." Well, I was, and I didn't. I just kept on surviving like I've done and will continue to do until the- what I feel is quite unlikely- transplant actually does happen. In honor of this 2 year mark,  I'd like to present some stats. Please read them with a hip hop beat in the background, if only to make things more lively.
  • Years on dialysis: 2
  • Number of treatments: 312 (roughly)
  • Hours of treatment: 1092
  • Number of kilos of fluid removed from my blood: 1248 (roughly)
  • That number in pounds: 2745.6
  • Number of times I've had to pee since 2009: 0
  • Flying on airplanes never having to pee: Advantaage
  • Number of cities traveled to while on dialysis: 6
  • Best visiting dialysis clinic: The Kidney Center,  Boston, Mass
  • Number of missed treatments: 0
  • Number of kidney related hospitalizations (in 2 years): 5
  • Number of dialysis related surgeries: 6
  • Number of current kidneys, working or non: 0
  • Number of stuffed kidneys with a face: 1
  • Number of months back at work while on dialysis: 20
  • Longest amount of time I've heard of someone being on dialysis: 31 years
  • Chances of me doing that: 0% chance
 That is a lot of fluid when you visualize that number. When you think about it, it's pretty amazing that dialysis can sustain someone's life when they're missing a major organ. It's not ideal, obviously, but it works until I can get a kidney. And for me, it's certainly better than the alternative.