January 17, 2012 Comments Off
10 . . . years since Lupus diagnosis.
2 . . . years since heart surgery (single bypass) due to Lupus complications, atherosclerosis.
1.5. . . years since my nephrologist said, “It’s time to find a kidney donor.”
42 . . . days since the kidney transplant.
5 . . . average number of days a kidney transplant patient stays at the hospital.
16 . . . days I spent at Methodist Hospital.
>15 . . . . doctors, including 5 nephrologists, a hematologist, an endocrinologist, 2 surgeons, 3 internists, 1 physical therapist, 1 nutritionist, 3 pharmacists, and probably several more I can’t remember.
60 . . . percent . . . damage my new kidney took because my APLA (blood-clotting disorder) went berserk post transplant. While it’s impossible to determine how long a transplanted kidney will last, it is highly likely that its longevity has been compromised.
30,000 . . . U.S. dollars . . . per dose of Soliris (Euclizamab), a rare drug used to treat my ultra-rare condition.
16 . . . infusions I will receive of this drug.
17 . . . prescription medications I was taking when I returned home from the hospital.
419,528 . . . U.S. dollars . . . for my surgery and hospital stay. Number does not include my donor’s surgery and hospital stay. Aetna, O, Aetna, please come through!
3 . . . kidneys in my body. Just one is working though!
10-15 . . . years . . . average lifespan of a transplanted kidney.
75 . . . years I HOPE my new kidney will last.
3 . . . lifetime friends I have gained . . . my friend and “swap” donor, Laura Horelica, my donor Nadia Salameh, and the other recipient, Susan Mashni. Wonderful, amazing people all.
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What’s kidney failure like?
Depressing answer. Yet, I’ve been wanting to properly thank the people involved in rescuing me from it, so I felt like I should answer the question.
(deletes two paragraphs) No, I will leave it to your imagination. It roils me to have written about this calamity so many times. Kicking up the dust with writing somehow keeps the disease alive, if only mentally. If you’re really interested in details you can scour my blog archives. Summary: it blows (kidney failure, not my blog archives).
Instead – casting Eeyore aside – I really wanted this to be upbeat and full of hope, because I’m being given a new lease on life. Being hopeful, I must note, takes an effort. I wish it didn’t, because I realize the amazing good fortune I have, but when you’ve been down and kicked for so long, you wonder when things will turn around. It’s not been fun to be in a situation where hope is dangerous . . . and it hasn’t just been the vile disease process, but also the ups and downs of the kidney transplant screening process. And it’s been the oh-so-fun dialysis in the meantime!
SHIT there I go again. Back to the hope and the thankfulness!
There’s a host of people I should thank, but the donors are foremost in my heart. It’s “donors” because there are two people giving up a kidney for me. Since my donor, Laura, wasn’t an entirely perfect match for me, she’ll be donating to another person needing a kidney, while I will receive one from that person’s donor. This way, kidney “life” will be optimized for everyone.
Thank you, Laura. And thank you, Susan. You are both love in action. You are heroes and great role models. You are inspiration to live a great life. You are saviors.
Laura, you’ve been SO UPBEAT throughout. I know it’s your personality but you must have not known upfront that the screening process would take forever. I was careful to NOT tell you so you’d stay, but I know you would have anyway. You did, and I thank you for your infectious joy in doing this harrowing thing.
I also must thank those who went through screening and didn’t pass. Mom, Sheri, Lauren, and yes, even you, Jody, even though your silent desertion caused anguish and tribulation. Your heart was in the right place. Thanks also to all those who had wanted to be screened – Kristy, Amber, Amber, Wendy, Lori, Jessica, Ellen, Linda, Sue, Rebecca, JB, Danelle, and everyone else I’ve forgotten. Screw that saying about good intentions. I was impassioned by your intentions.
By now at the awards show, they’d be cueing up the music. But I must also thank my family and friends. I said in an earlier post that I have an embarrassment of riches in this category, and it’s true. Thank you, everyone, for the support – the meals, the text messages and emails, the cards, the hospital visits, the blog comments, the re-tweets, and the love.
Thanks to Laura’s family, and to the family of my donor. Your support of all of us . . . it means everything.
For all the dialysis nurses, you were angelic visitors in my crummy world. Thank you.
Mom, thanks for setting your life aside for us for the last several years. You’re amazing.
Finally – and I’m tearing up here – to my devoted wife, my everything . . . you have stood by me to hell and back. I love you more than anything in this world.
As of this writing, it’s 13 days until the transplant. As we move closer, my hope increases, and it’s all because of you. Thanks – JT
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So I’m sitting in my bathtub at 5:43 a.m. . . .Wait. I guess I should first explain why I was in the BATHTUB.
No, the tub wasn’t full of ice and I hadn’t had my kidney stolen by Black Market organ thieves (how f**ing ironic that would be). Actually, I was in the tub because I’ve had lupus for 10 years which begat kidney failure which begat the need for dialysis which begat a jugular catheter which can’t get wet in a shower. Hence, the bath.
So I’m sitting there enjoying some quiet. It should be about an hour until the four kids in the house need to get up. Then, in a moment that flashed like lightning, all of the following occurred: (1) my six-year-old daughter appears from behind the towel rack (2) I jerk like an electrocuted Tasmanian devil (3) I slam my hand on the corner of the bath tub, and (4) my hand bleeds.
My ninja-like reaction was presumably in preparation to vanquish the morning zombie, who was obviously intelligent because he’d somehow bypassed the house burglar alarm. After several milliseconds, though, I’d discovered it wasn’t a zombie, but rather my precious little girl at the end of my look. She’d arisen quite early for school and had ventured downstairs. Of course, my knee-jerk reaction was to scream.
“PIPPI! WHAT ON EARTH ARE YOU DOING!?!??!”
And she runs off. Boo, daddy.
After toweling off, I discover we have run out of regular band-aids. So I do what anyone would do: I raid the Barbie band-aids. Ordeal over, but it’s still a head-scratcher.
You’d think having dealt with bullshit like lupus and heart surgery, maybe I wouldn’t have to deal with any other ticky tack stuff . . . yet, here you are, Chronic Jumpiness. Amazingly, like lupus, no cure is known.
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The end of an era happened in our house last weekend. The display on our 400-disc player simply read: “Table Error,” and a season of our lives was over. Though the carousel had died, its innards still contained 400 shiny discs, each with a distinct design, each representing music we’d fancied at one point or another over the past 34 years.
I remember the first CD I ever bought – Locust Abortion Technician (pictured to the right) by the Butthole Surfers in 1987. It sat all by itself on my bedside table in the freshman dorm. Sometimes I would just take it out of the case and admire it, being careful not to smudge the disc. We’d been so accustomed to kid-glove handling with cassettes and vinyl; these CDs seemed like fragile jewels that we’d certainly replace at least once.
“Maaaaaan, it souuuuuuunds greaaaaaaaat!” our dorm-mates mused in the smoky mist. ”Annnnd you can rewind it, like, innnnstannntlyyy! Hey, play Sweatloaf again!”
Cassettes were suddenly regarded as aural garbage, and perhaps rightfully so. No more hiss, no more warbling, and no more 74-foot long unravelings.
Yeah, man, CDs were great! Crystal clear audio, a fairly durable medium (it turned out), and more capacity that your standard cassette. The only disadvantage to buying a CD was that the packaging was impossible to open. I remember one comedian suggesting that the CD wraps were so impenetrable, they should be used for contraception.
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What a welcome change of pace it’s been lately, returning to my waiter nightmares. The whole zombie thing has
been fun and all, but frankly my wife’s getting sick of rescuing me every night from the flesh-hungry Mr. UUUHHHHNNNNN.
Don’t get me wrong, I hate these waiter dreams. They’re so ridiculous and frustrating that I wonder why I spend precious brain cells creating them, being terrified in them, and losing sleep because of them. But I thought it might be interesting if some of you ex- or current foodservers might have these same nightmares I have.
WHO ARE YOU?
This, the squirreliest of all my nightmares, usually occurs at Chili’s, my first waiter job. In this dream, I walk into the restaurant filled with dumb nostalgia; “I can’t believe I’m really back! I’m really here and I have my first shift!”
The hostess points to my section and tells me I have tables. As I greet my first two-top, it occurs to me that I have no idea what is on the menu, and that I’ve received zero training for this first shift. Yet, the people order two Miller Lites – which is doable – so I set off to find the bar.
Here’s where the trouble begins. I walk up to the computer terminal where orders are punched in. I have no idea what my ID number is (required to log in). So I look around a sea of waiters and waitresses – none of whom I recognize – and I say, “UM, WHERE’S THE MANAGER?” A manager-looking person comes up to me and says, “Who are you?” I respond, “I’m Jeff, I used to work here and now I’m back. What’s my ID number?”
As we languish by the terminal, I notice that I have 2 more tables in my station. They’re looking around for me. I don’t have an ID number, and the manager doesn’t know who I am! He finally punches me in, but I didn’t remember the number.
I go back to my station and take two more drink orders and an appetizer order at the first table. I come back with a fistful of tickets, and no way to ring them up. It’s been about 10 minutes and I haven’t even delivered drinks to the table! That’s when the terror ramps up (OMIGOD I’M IN THE WEEDS!) and I wake up thanking God I’m not back in the profession.
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